Wednesday, Oct 15th, we headed to St Louis. Kai & Linnea both had echos and saw Dr Sharkey. Linnea’s aortic root has not grown at all, so excellent news! If Linnea’s DNA test comes back positive, then she won’t need this surgery until her aortic root gets to 4.0 cm. Kai’s heart looked fine, but Dr Sharkey didn’t think it was squeezing quite as hard as it did before the surgery, so she did an EKG as well. I believe what she told us was that the electrical signals just weren’t making all the way around his heart like it was supposed to, but that was not anything to worry about, it was still pumping hard enough. They will both go back in 6 months to be checked again. Linnea will have an MRI w/ contrast to check for other dilations/aneurysms. She agreed to do MRI’s instead of CT’s (CT’s have too much radiation and now the kids are old enough to stay still for the amount of time an MRI takes). Both kids will start Cozaar(Losartan). She agreed to write prescriptions so that I could send them to be filled w/ a generic from a Canadian pharmacy (they have generic there and we don’t here. I can get 90 pills for $75 there w/ no insurance cvg and it would cost me $180 here w/ insurance cvg). I asked Dr Sharkey how many Loeys-Dietz patients they see at this clinic and she said there are now 10, so 8 others besides my 2 kids. Not a whole lot!
After the kid’s appointments, we had lunch at the California Pizza Kitchen then we went to go see a movie. Linnea and I wanted to go see Beverly Hills Chihauhau and Kai wanted to see Eagle Eye and Bryan decided to see BHC w/ us. We were all pleased w/ our choice.
Thursday the 16th, we went to get my chest xray first. They of course didn’t have the order for it, so I went to check in at the doctor’s office and then they gave the me the order and I had to go across the hallway and get the xray, then back to the office. I met w/ Dr Moon first. He said I was doing fine, as expected. Everything sounded/looked good. He didn’t have an answer for a lot of my questions, but said those types of things should be directed to the head nurse who would pull my file and try to answer them from there. There was an out patient nurse practitioner, Rita Gardner, who was w/ Dr Moon during our meeting. I will try to summarize my conversation w/ Dr Moon.
1) My aortic root was 4.6cm.
2) Everything in the surgery went as expected.
3) The lady cutting on me was Laura Adams, who is a surgical tech or something, but he said they are the ones who always do the initial cutting on the chest.
4) My body was cooled to about 32 degrees centigrade (89.6 degree Fahrenheit).
5) One of the bypass tubes (to the heart/lung machine) goes in the atrium and the other one goes in the aorta above where the graft goes (I am not exactly sure if it is in the arch, before the arch or what, but I would assume it would be before the arch so that the arteries coming out of the arch would get the blood flow).
6) My heart was not stopped until after the bypass tubes were put in (so I would assume that is how I lost some blood)
7) My heart was stopped w/ chemicals and then when blood started flowing thru it again, it started on its own, no drugs or shocks needed. (that’s cool!)
8) There was no glue or anything on the outside of my incision, just stitches that are just below the surface.
9) The drain tubes were about a 32French which is the equivalent to .96cm, so not quite 1 cm. Seemed a lot bigger than that!
10) I have 8 wires in my breastbone holding it together. I have the xrays showing them.
11) He laughed when I asked him where the top part of my boobs went. He said he didn’t do anything w/ them and had not heard of others going somewhere. Hmmmm, ok, maybe I was just thinking they were bigger
12) The person doing rounds every morning was Dr Denenlinger (sp?) who is the chief resident. Dr Moon says he came to see me every weekday. I don’t remember seeing him on Thursday or Friday, just Wednesday and the day I left (Monday)
13) He’s never heard of Zanaflex and so does not know of any dangerous interaction w/ Cipro and can not answer why the pharmacy would not have caught that, suggested maybe it is not a known interaction. I told him the pain doctors knew about as soon as they saw the chart and I found the information on the internet.
14) They didn’t know why the ICU staff wouldn’t call Bryan when I asked them to.
15) They told me that in the ICU, there is one nurse for each patient, so there is no reason why I should have been left alone for some long.
16) They didn’t know why anyone would give me meds that is clearly on my allergy bracelet. Even if the doctor ordered it, the nurse should not have given it to me when she checked my allergy bracelet.\
17) The central line was taken out when I left the OR because of the risk of infection. So, I asked if I had to have another surgery, could I request it be left in for administration of meds & drawing of blood and he said I could request it, but more than likely it would be taken out because the risk of infection is too great. (If that were true, then why would the Children’s Hospital leave Kai’s in until the day he left?)
18) When I asked him why the adults in Barnes were treated so differently than the children in the Children’s Hospital, he said “because adults understand more of what is going on and can handle/tolerate pain and situations better than children.” I said, “if they can wait to put all IV’s in a child until after they are asleep, then why can’t they do it w/ adults” he said, “adults can handle having IV’s put in” I explained to him that I was not able to tolerate someone digging around in my veins and if it was really necessary to have IV’s in before the OR, then why would the main anesthesiologist have told the other one to just wait until we get to the OR to put in the IV’s? At one point in time, he actually said, “Well, this is not a vacation, it is a surgery and recovery” and he said it a couple of times. I was shocked at the lack of compassion and lack of understanding of how some very small changes in procedures and treatment of patients could make some huge improvements in patient care.
19) He and Rita both encouraged me to write a letter to Maggie Turner, the head nurse and the one who asked me to fill out a feedback form. The felt like I had valid concerns that someone needed to be able to give me some answers on and make sure it doesn’t happen to someone else.
20) He did go thru the photos and videos and point some things out that we didn’t know what they were.
I cried thru most of the time I was w/ Dr Moon and Rita. I was just so upset. I was really hoping that by talking to them and airing my concerns, I would get the answers I needed and could find some closure in all of this, but it was obvious that that was not going to be the case. Needless to say, when Dr Braverman came in I was still upset and had a hard time talking to him in the beginning. But, unlike Dr Moon, Dr Braverman looked me directly in the eyes and said he was really sorry that I had such a bad experience w/ the surgery. He really seemed genuinely concerned, empathetic, and patient, not in any hurry to leave the room. One thing Dr Braverman said to me was that most people who go in for open heart surgery are very sick, don’t feel good when they go in, so they actually feel better when they get out, but I felt fine when I went in for this preventative surgery, so it was natural that I would feel much worse when I got out of the hospital.
1) But he reassured me that I was doing fine. Everything sounded good.
2) He just wants my blood pressure down further. He would like it to be around 110/70 and it is currently 110-130/80’s. So, he has me taking another 50mg of Cozaar at night as well as in the morning. So, 50 mg Cozaar am & pm and 25 mg of Toporol XL am & pm. If that doesn’t do the trick, then in a week or so, he might have to add a diruectic or increase the Toporol XL.
3) He is certain that as my heart continues to heal, my heart rate will drop some more to a more “normal” level. My maximum exercising heart rate for now should not exceed 120. That won’t take much.
4) He is going to do MRI’s yearly from head to pelvis to check for aneurysms and will see me once a year, but wants to see me again in January, then I am not sure if he wants to see me in April when the kids come down, or not until July which would be 6 months from January.
5) He agreed to fill out the paperwork for the Handicap Plaqard for 3 months so I don’t have to walk as far to get into work for a while.
6) He said I need to start exercising more to help get my body back to where it was prior to the surgery, increase my stamina. Since I can’t do much more walking than what I am doing now (because of my ankle), then I need to get back on my stationary recumbant bike, but I will have to monitor my heart rate.
7) He said they are finding more and more people who have a mutation for a connective tissue syndrome, yet the mutated genes are not expressing themselves (the person appears to be like a carrier instead of being affected, but they are still autosomal dominant genes and they just don’t know why the expression is so different even with the same family). I didn’t ask him how many adults w/ Loeys-Dietz are seen at Barnes/WashU, but it sounds as if more are being diagnosed all the time.
8) Since Loeys-Dietz is not a regulated communicable disease, there is no official “database”. (I think I am going to do some more investigating. I think there needs to be one out there for those who want to be counted)
So, although I came away from the appointments w/ the news that I am doing fine and there is nothing to worry about (just need to get my blood pressure back under control), I didn’t feel the relief that I thought I would.
On Friday, the 17th, Rita Gardner called me. She said she was really concerned about me since I had been so upset during my appt w/ Dr Moon and she wanted me to know that she was really sorry that I had such a bad experience in the hospital and that I should not only write a letter to Maggie Turner, I should write a letter to patient services too, it needed to go higher than the head nurse. She thinks that my questions and concerns are very valid and need to be addressed. She said that she understood my need for closure and wanted to help in any way she could. She said she too was kind of surprised at the “not on vacation” statement by Dr Moon, but said she thought he was just trying to convey that surgeries are never fun. She asked me about my appt w/ Dr Braverman and how I felt after talking w/ him. I explained that I felt like he was genuinely concerned and empathetic and didn’t seem to be faking it at all, then she asked me if I thought Dr Moon was faking it. I told her I thought he tried hard to be genuinely concerned, but didn’t really convince me that he was. We were on the phone for 37 minutes. I was just really impressed w/ her compassion and interest in helping find some answers and closure. I knew she was genuinely concerned. It’s too bad the hospital doesn’t have more people like her employed there. She is truly concerned about improving patient care and satisfaction and is willing to go the extra mile to do what she has to to achieve it. I felt so much better after talking to her.
Not too long before her call, I received a call from Mary at Dr Pegram’s office. Linnea’s DNA test came back positive. It didn’t upset me too much, because I knew it was going to come back positive. At least now I know that when her aortic root nears the 4.0 cm mark, then we need to start thinking about surgery for her. Hopefully, we will have a while. Kai’s test results have not come back yet, I suspect because the lab is waiting to hear from BCBS since it is Kai’s primary insurance. Well, we know it too will come back positive.
Friday night, I went out w/ Stacey, Phillip, Shauna and some of Phillip’s friends. It was so nice to be out w/ my peeps! It made me almost feel normal again. It was great! I can’t wait to get back to work, but I have to get my blood pressure controlled and increase my stamina a bit before that happens. Rita faxed over my release form stating that I could start working from home for 4 hours a day for 2 weeks starting November 3rd (thru the 14th), then go back to working at work full time November 17th. That will be 10 weeks, so my breastbone should be pretty healed by then. I am excited about going back to work, I am just paranoid about going back to my pre-surgery rate which is getting from point A to point B in a good time. I notice that it doesn’t take long for my chest to start hurting if I get to walking too fast. I don’t want to overdo it and then start hurting and freak out the people around me. But, I want to jump back in, hit the ground running, and come out swinging!
Oh, last weekend was when Chris (Sloan’s husband) ran the Ford Ironman World Championship Tri-athelon in Kona, Hawaii. I tracked him all day long on the computer. The winner finished just over 8 hours and Bryan and I were watching everyone cross the finish line. I texted Sloan a couple of times to see how he was holding up. She said he was really hurting by the time it came to the running portion. Well, after watching for more than 9 hours, about a minute or less before Chris crossed the finish line, my computer froze up (or it was our fabulous Comcast service) and by the time I got it back up, he had already crossed. So, I missed him crossing the finish line! I was so pissed!!!!!! I really wanted to see that. I am hoping Chris will have purchased the DVD and I hope it shows all the finishers. He finished in just over 11 hours 17 minutes I think. He didn’t make one of his goals to finish under 10 hours, but I still think it is an amazing accomplishment to finish it at all. I don’t think I could do as much as he did in my lifetime let alone in 11 hours!
This week, I go to Dr Rink, my physiatrist, to see what he can do for my neck and back. He is the one who was giving me the trigger point injections in my back and neck before the surgery. I did talk to his nurse a while back and she said he reviewed the MRI I had again and said I do not have the Chiarri malformation, but I am still not convinced since it was taken in the flexed and extended position, but I am hoping he will have some ideas on how to stop the pain in my neck and back. I think I am also going to call Dr Hurford’s office and see if he will see me when he sees Kai and Linnea on the 31st. Someone has got to figure out a way to get rid of this nearly constant pain in my neck and back. I just can not accept having this chronic pain for the rest of my life. It scares me to think that both my kids’ backs are more curved than mine and it makes me wonder if they will have worse pain than I do as they get older. I certainly hope not. It is just so hard to function w/ chronic pain.
Kai and Linnea both have their yearly check up w/ the pediatrician on the 29th. That is when we address the “early puberty” issue concerning Linnea. Keep your fingers crossed that she is not going thru that yet. They will both get their flu shots then too. Oh, that will make them happy, NOT!!! I need to get mine scheduled as well as my mammogram (I got a reminder in the mail today)
Oh, Linnea bowled today. Her average going in was 40, her first game was 44 and her second game was 77, so pretty good today. She just might get bowler of the week next week w/ those scores!
Ok, enough for now. Time to go to bed. Happy Birthday to my cousin Bret tomorrow (19th)! Ha! He’ll be 40!!!!
Saturday, October 18, 2008
Tuesday, October 7, 2008
Yes, I am still blogging :-)
Last post was last Thursday. Friday, Mary Lee (from work) brought over a ton of food: salisbury steak, sloppy joes, cheesy potatoes, breakfast casserole, and ice cream dessert! And it was all delicious as always. Thank you so much Mary Lee. My peeps at work really are taking care of me. Mary Lee had a really good idea; instead of me being here alone, they could put a rocking chair in my row and I could just sit there and talk to people all day, that way I could be around my peeps and I could liven the place up for them:-) Yeah, they have all said that it is pretty quiet without me there. Hmmmm, imagine that! While Mary Lee was here talking to me, she asked me why I hadn’t become a doctor with all the medical knowledge I had. My answer, I didn’t want to spend 12 yrs in school beyond high school and I didn’t want to have to study so hard. Wow! How dumb was that?!?!?! I look back at some of the decisions I made as a teenager/young adult and can’t believe I was so dumb. Like we have all said, if I could only do it over again….. Oh well, maybe in the next life.
Saturday, Linnea bowled again. I went again and helped coach a little. I stayed seated but tried to help out when I could. She got a 33 the first game and a 66 the second game. Her average going in was 37, so she is doing better. We had her ball plugged and redrilled again since her hand grew again. The first game, the edges of the holes were a little sharp, so I think that is why her first game was so low. As soon as we took it back to the proshop and had them smooth out the edges, she started doing much better. I walked all the way around the block on Saturday too. Took me a while, but I made it. I sure was tired by Saturday late afternoon. One of the gift certificates we received from my co-workers was for Ruby Tuesday, so we went out for dinner Saturday night as well. Oh man, was it good, but there was so much. My one meal was enough for 3 separate meals for me, so we took plenty home for leftovers. I even had 2 dacquiris!!! Mmmmmmm! Man, I missed my dacquiris!
I don’t remember much of what I did on Sunday, but I got an email from Sloan & Chris. They left for Hawaii for the 2008 Ford Ironman World Championship. Chris qualified for this even back in April or so. Only 1800 people worldwide can qualify. I am really proud of him, but he is in excellent shape and deserves this. His goal is to beat the 10 hour mark. Get this, he has to do all of this in less than 10 hours: 2.4-miles of swimming, 112-miles of biking, and a 26.2-mile marathon run through tough ocean waves, and challenging lava-covered terrain! I don’t think I could do all that in a whole year! So, good luck Chris, hope you beat your goal. If anyone is interested, Chris also has a blog: http://getfastorquit.blogspot.com/ And there is a live webcam at the finish line so you can see the finishers: www.ironmanlive.com. Here’s a link to the website giving some more info: http://ironman.com/events/ironman/worldchampionship/?show=about
Starting yesterday, my heart decided it was going to start doing it own thing. It started with a very irregular heart beat. Not only is it different than what it’s been since the surgery or before the surgery, but there is absolutely no regular rhythm to it at all. It only lasted an hour or so maybe, but then later in the day, my blood pressure meter told me it was doing it again. Today, the same thing, but my heart rate was down in the 40’s!!!!!! Ok, it started out in the 90’s, but had come down into the mid to high 80’s and now it goes down into the 40’s? What the heck is with that! I wasn’t dizzy or anything, I just didn’t feel right. I can’t put an explanation to it, I just didn’t feel right. I even checked it on Bryan’s machine and it said the same thing. He thought maybe my machine just was not reading it correctly. Yes, it is still irregular. So, I ended up calling Braverman’s office between 2:30 & 3:00 and told the nurse about what was going on, she talked to Braverman and called me back about 3:30. By about 3:00 my heart rate had gone back up to the 80’s but was still pretty irregular. He wanted me to go have another EKG at Carle, so Bryan took me over there and I had another one done. It was the same gal that did the last one a couple of weeks ago. It did show some irregularities and she read me what it said, but the only part of it that I knew what it meant was Premature Atrial Contractions. Well, I normally have Premature Ventricular Contractions and I knew what I was feeling was not PVC’s. So, something w/ my Atrium now instead of my Ventricles. But, she said she sees those a lot on patients who have EKG’s done. She was faxing it down to Braverman’s office as soon as I left, but that was like 4:30, so I probably won’t hear anything until tomorrow. And more than likely, they will say it is nothing out of the ordinary. I just think that it is VERY strange that my normal rate is so high then for an hour or more, it drops down into the 40’s. The only thing I can think of is maybe since my medicine is an extended release, maybe that is when it is being released into my system, but that does not explain the irregularity of it. I wish I understood more in the Cardiology world.
I am still using the Silicone Strips on my scars. The scab where the right drain tube was finally fell off yesterday, so I started putting the strips on there as well. It is really flattening out, especially the big lump at the top of my long incision! The gal who did my EKG even commented on how good it is healing up.
I called my PCP office today to find out if they had rcvd my medical records yet from Barnes. They had and they had already been sent to be imaged. I was pissed. I left specific instructions on not to scan anything until I had a chance to copy everything. Well, the nurse said she would copy everything for me but there wasn’t much there, only an operative report and a discharge summary. Ok, now tell me why did I bother to check all the boxes of what they needed to send AND include a yellow sticky note asking for the CD images of all x-rays, echo’s, etc if they aren’t going to bother to read any of it and send only what THEY feel they need to send? I also got copies of Kai’s (his PCP’s nurse copied everything before they were sent to be imaged and had copies there waiting on me!) The children’s hospital also did not include everything I asked them to include so I have to call them and have them send what I asked for that they left out. Can anyone explain to me why patients fill out these forms? It’s my GD information, give it to me!!!! And don’t leave anything out! ARGH!!!!!!!!!!!!!!!
Tomorrow night State Farm Activities Association is having a Chili dinner, so that is what we will be having for dinner tomorrow night. Linnea had her first Brownie (Girl Scouts) meeting of this school year last night and she brought home a painted pumpkin that she made look like a witch. The stem on the top was the top of the witch’s hat. I thought that was pretty clever. She did a really good job.
Kai went back to school full days this week. Tomorrow, he gets to launch the rocket he and Bryan built for his technology class, so he is really excited about that. Thursday, he has a “Cemetery Walk”. It is an outdoor theater even in which professional actors portray people who are buried at the cemetery. Then they get to go to the mall for lunch. It sounds like fun, but Kai is worried that he won’t be able to walk or stand for as long as the event lasts. I told him to make sure he carries something w/ him that he can put down on the ground to sit on in case his leg or back starts to hurt him. If he needs to, I am sure they will let him go back to the bus to sit. Then, next week he gets to go to the Challenger Learning Center for a “Voyage to Mars” and the Prairie Aviation Museum and a pizza lunch there. The Challenger Learning Center gives kids a chance to see what being an astronaut is like. On the 22nd, he gets to go over to Underwood Park where their science class will launch 2 liter bottle rockets as part of a project. So, sounds like he has an exciting few weeks coming up in school.
This Friday is Bryan and I’s 10th anniversary! I can’t believe it’s been 10 years already! In a way, it has flown by, and in other ways, it seems to have been a lifetime. I asked him last night if he were to have known that I had Loeys-Dietz and would have to go thru all these operations, see all these doctors, etc, if he would have ever married me. I know, that is not really a fair question to ask, but I just wondered what he would say. Of course his answer was, “I don’t know” If he would have said, “Of course honey” I would have known that he would have been lying:-) I don’t blame him for not knowing. If the tables were turned, would I have gone ahead and married him? Hind sight is 20/20, but foresight is 20/1. I used to think that I would want to know the future if someone could tell/show me. I am not so sure about that now, maybe the good stuff, but not the bad stuff, or maybe some cryptic warnings would be nice:-)
Every day now I thank God for my family, friends, possessions, work, and the health that I do have. I see so many people who are worse off than me and that is always in the front of my mind now. I am thankful each and every day I wake up and start a new day and every night when I have made it thru another busy day. I realize how very lucky my kids and I are to have each other, have Bryan, and to have the doctors who are experts in our condition. Unfortunately, all this realization/thankfulness has made me an even more emotional person. Seems like I cry a whole lot more than what I did when I think about how fortunate we really are. So, if you are talking to me about all of this, don’t be surprised when I start crying. I just can’t help it (in fact, I am crying about it right now just typing it).
I am down to just basically 600mg Ibuprofen 3-4 times around the clock. I wait just as long as I possibly can so I can try to get back to my normal amount of only 600mg in the morning and 600mg at bedtime. I have to say, it is much easier to get up in the mornings, not so hard to breathe, not so achey. But, I have been guilty of going back to bed after Linnea leaves for school. I don’t think I ever manage to get back to sleep, but laying there resting feels pretty good. I usually get up and around about 10:30 and get in the shower so I can hopefully be ready for my Young & Restless at 11:00. Well, I still have the rest of the week to try to stay up and do something constructive during the day.
Enough for now, so as they say in Hawaii, Hang Loose Cuz!
Saturday, Linnea bowled again. I went again and helped coach a little. I stayed seated but tried to help out when I could. She got a 33 the first game and a 66 the second game. Her average going in was 37, so she is doing better. We had her ball plugged and redrilled again since her hand grew again. The first game, the edges of the holes were a little sharp, so I think that is why her first game was so low. As soon as we took it back to the proshop and had them smooth out the edges, she started doing much better. I walked all the way around the block on Saturday too. Took me a while, but I made it. I sure was tired by Saturday late afternoon. One of the gift certificates we received from my co-workers was for Ruby Tuesday, so we went out for dinner Saturday night as well. Oh man, was it good, but there was so much. My one meal was enough for 3 separate meals for me, so we took plenty home for leftovers. I even had 2 dacquiris!!! Mmmmmmm! Man, I missed my dacquiris!
I don’t remember much of what I did on Sunday, but I got an email from Sloan & Chris. They left for Hawaii for the 2008 Ford Ironman World Championship. Chris qualified for this even back in April or so. Only 1800 people worldwide can qualify. I am really proud of him, but he is in excellent shape and deserves this. His goal is to beat the 10 hour mark. Get this, he has to do all of this in less than 10 hours: 2.4-miles of swimming, 112-miles of biking, and a 26.2-mile marathon run through tough ocean waves, and challenging lava-covered terrain! I don’t think I could do all that in a whole year! So, good luck Chris, hope you beat your goal. If anyone is interested, Chris also has a blog: http://getfastorquit.blogspot.com/ And there is a live webcam at the finish line so you can see the finishers: www.ironmanlive.com. Here’s a link to the website giving some more info: http://ironman.com/events/ironman/worldchampionship/?show=about
Starting yesterday, my heart decided it was going to start doing it own thing. It started with a very irregular heart beat. Not only is it different than what it’s been since the surgery or before the surgery, but there is absolutely no regular rhythm to it at all. It only lasted an hour or so maybe, but then later in the day, my blood pressure meter told me it was doing it again. Today, the same thing, but my heart rate was down in the 40’s!!!!!! Ok, it started out in the 90’s, but had come down into the mid to high 80’s and now it goes down into the 40’s? What the heck is with that! I wasn’t dizzy or anything, I just didn’t feel right. I can’t put an explanation to it, I just didn’t feel right. I even checked it on Bryan’s machine and it said the same thing. He thought maybe my machine just was not reading it correctly. Yes, it is still irregular. So, I ended up calling Braverman’s office between 2:30 & 3:00 and told the nurse about what was going on, she talked to Braverman and called me back about 3:30. By about 3:00 my heart rate had gone back up to the 80’s but was still pretty irregular. He wanted me to go have another EKG at Carle, so Bryan took me over there and I had another one done. It was the same gal that did the last one a couple of weeks ago. It did show some irregularities and she read me what it said, but the only part of it that I knew what it meant was Premature Atrial Contractions. Well, I normally have Premature Ventricular Contractions and I knew what I was feeling was not PVC’s. So, something w/ my Atrium now instead of my Ventricles. But, she said she sees those a lot on patients who have EKG’s done. She was faxing it down to Braverman’s office as soon as I left, but that was like 4:30, so I probably won’t hear anything until tomorrow. And more than likely, they will say it is nothing out of the ordinary. I just think that it is VERY strange that my normal rate is so high then for an hour or more, it drops down into the 40’s. The only thing I can think of is maybe since my medicine is an extended release, maybe that is when it is being released into my system, but that does not explain the irregularity of it. I wish I understood more in the Cardiology world.
I am still using the Silicone Strips on my scars. The scab where the right drain tube was finally fell off yesterday, so I started putting the strips on there as well. It is really flattening out, especially the big lump at the top of my long incision! The gal who did my EKG even commented on how good it is healing up.
I called my PCP office today to find out if they had rcvd my medical records yet from Barnes. They had and they had already been sent to be imaged. I was pissed. I left specific instructions on not to scan anything until I had a chance to copy everything. Well, the nurse said she would copy everything for me but there wasn’t much there, only an operative report and a discharge summary. Ok, now tell me why did I bother to check all the boxes of what they needed to send AND include a yellow sticky note asking for the CD images of all x-rays, echo’s, etc if they aren’t going to bother to read any of it and send only what THEY feel they need to send? I also got copies of Kai’s (his PCP’s nurse copied everything before they were sent to be imaged and had copies there waiting on me!) The children’s hospital also did not include everything I asked them to include so I have to call them and have them send what I asked for that they left out. Can anyone explain to me why patients fill out these forms? It’s my GD information, give it to me!!!! And don’t leave anything out! ARGH!!!!!!!!!!!!!!!
Tomorrow night State Farm Activities Association is having a Chili dinner, so that is what we will be having for dinner tomorrow night. Linnea had her first Brownie (Girl Scouts) meeting of this school year last night and she brought home a painted pumpkin that she made look like a witch. The stem on the top was the top of the witch’s hat. I thought that was pretty clever. She did a really good job.
Kai went back to school full days this week. Tomorrow, he gets to launch the rocket he and Bryan built for his technology class, so he is really excited about that. Thursday, he has a “Cemetery Walk”. It is an outdoor theater even in which professional actors portray people who are buried at the cemetery. Then they get to go to the mall for lunch. It sounds like fun, but Kai is worried that he won’t be able to walk or stand for as long as the event lasts. I told him to make sure he carries something w/ him that he can put down on the ground to sit on in case his leg or back starts to hurt him. If he needs to, I am sure they will let him go back to the bus to sit. Then, next week he gets to go to the Challenger Learning Center for a “Voyage to Mars” and the Prairie Aviation Museum and a pizza lunch there. The Challenger Learning Center gives kids a chance to see what being an astronaut is like. On the 22nd, he gets to go over to Underwood Park where their science class will launch 2 liter bottle rockets as part of a project. So, sounds like he has an exciting few weeks coming up in school.
This Friday is Bryan and I’s 10th anniversary! I can’t believe it’s been 10 years already! In a way, it has flown by, and in other ways, it seems to have been a lifetime. I asked him last night if he were to have known that I had Loeys-Dietz and would have to go thru all these operations, see all these doctors, etc, if he would have ever married me. I know, that is not really a fair question to ask, but I just wondered what he would say. Of course his answer was, “I don’t know” If he would have said, “Of course honey” I would have known that he would have been lying:-) I don’t blame him for not knowing. If the tables were turned, would I have gone ahead and married him? Hind sight is 20/20, but foresight is 20/1. I used to think that I would want to know the future if someone could tell/show me. I am not so sure about that now, maybe the good stuff, but not the bad stuff, or maybe some cryptic warnings would be nice:-)
Every day now I thank God for my family, friends, possessions, work, and the health that I do have. I see so many people who are worse off than me and that is always in the front of my mind now. I am thankful each and every day I wake up and start a new day and every night when I have made it thru another busy day. I realize how very lucky my kids and I are to have each other, have Bryan, and to have the doctors who are experts in our condition. Unfortunately, all this realization/thankfulness has made me an even more emotional person. Seems like I cry a whole lot more than what I did when I think about how fortunate we really are. So, if you are talking to me about all of this, don’t be surprised when I start crying. I just can’t help it (in fact, I am crying about it right now just typing it).
I am down to just basically 600mg Ibuprofen 3-4 times around the clock. I wait just as long as I possibly can so I can try to get back to my normal amount of only 600mg in the morning and 600mg at bedtime. I have to say, it is much easier to get up in the mornings, not so hard to breathe, not so achey. But, I have been guilty of going back to bed after Linnea leaves for school. I don’t think I ever manage to get back to sleep, but laying there resting feels pretty good. I usually get up and around about 10:30 and get in the shower so I can hopefully be ready for my Young & Restless at 11:00. Well, I still have the rest of the week to try to stay up and do something constructive during the day.
Enough for now, so as they say in Hawaii, Hang Loose Cuz!
Thursday, October 2, 2008
I have to remind myself, I am only 3 weeks past my surgery!
Linnea bowled on Saturday. She did pretty good. Her first game was a 59 and her second game was a 30 I think. We took her ball to the pro-shop afterwards and had them re-measure her and plug and re-drill it so it will fit her hand better. They called us last night and said it was ready, so we’ll probably go pick it up tonight. After bowling, we went to K-Mart, so that was my outing for the day. How exciting. Saturday evening Michelle Jensen and her daughter Brianna brought us Longhorn Smokehouse & Dilly Bars for dinner. Brianna looks like she is doing great after her 2nd back surgery which was on Sept 10th, I think. Kids just bounce back so quickly.
Sunday was my birthday. I think I slept in a little. My mom called and said she was going to come up for a few hours. She got here a little after noon I think. Bryan and Linnea had gone out for some last minute shopping. When they got back, my mom was already here. Since Kai had copped onto my chenille blanket, Bryan and Linnea picked out a new one for me. This one is like a soft fleece and is twin sized so it will come up clear around my neck and will still cover my feet. I also got some new little speakers for my laptop. The speakers on my laptop aren’t that loud and Kai had found a decent little pair at Dollar General, so I thought they would work pretty good on my laptop. They also got me a Halloween shirts that says “Ladies Night” w/ a witch flying across the sky and the smoke from her broom lights up when you move. It’s funny. I told them that means I will have to go out w/ the girls to celebrate Halloween. Sounds like the perfect excuse for a night on the town.
Joanne & Johanna Barnes (from my Marfans group) came over around 2:30 and brought a couple of pizzas, salad, and ice cream for us. They also brought Kai & I books and Linnea a movie, some Ty beanie babies and few other things. They are so thoughtful. We had a good chat and laughs. I think that is the night we watched “What Happens in Vegas” w/ Ashton Kutcher and Cameron Diaz. That was pretty funny. Then of course, was the opening episode of the new season of Desperate Housewives. Wow, what a shock that one was. I didn’t think we would have shot forward 5 years! That’s an awful lot of time unaccounted for……probably a couple of season’s worth. Then it was the new season of Brothers & Sisters. It was a good day.
Monday, Bryan went back to work, so I have to be up now at 6:30 to make sure Linnea gets up and gets ready for school. Kai is still doing half days at school. Monday morning was hard for me. I didn’t have anyone here w/ me and I really hate being alone. My mind wanders to dark places and I don’t like going there. I’m going to have to figure out what will distract me and keep me on the bright side to help the healing. I spent most of the day surfing the net for information & people related to Loeys-Dietz. Again, I think we are very lucky having such minor symptoms/characteristics. There are so many more people out there who have more of the symptoms and more severe.
Tuesday was more of the same. Wednesday wasn’t much different either. The only new thing on Wednesday is that I have now started using Silicone strips on my big incision. I had it on for only about 2-3 hours yesterday to see if I was going to be alright w/ it and not have a reaction. All went pretty good. In fact, it actually feels really good on there. It’s like a cushion and prevents things from rubbing up against it, so this may turn out to do double duty. The incisions where my drain tubes were aren’t healed enough yet to put anything on them. In fact the right one still has a thick scab on it. It may be almost another week before that falls off. I had heard that the Silicone strips were the best scar removal thing you could get, but they are VERY expensive. Good thing is they are re-usable. Well, Sloan had some left over from when Emily had a wreck; she gave me enough to cover my big incision and maybe my drain tubes too. That would be great if I could really get this thing to be flat, pale like me, and thin. It may take up to 6 months or more, but it is comfortable, so I don’t mind. I put a bra on for the first time today since the surgery. I figured since I have the silicone strip, it will cushion it and I am hoping that the bra will help me pull my shoulders back and stand up straighter. The pain in my chest, shoulder & neck make me hunch forward and that kills my back, upper and lower and it’s just a vicious cycle. So far, so good, but it’s only been a couple of hours. Not sure if I can do it all day.
Today, Phillip & Mary Kae came over for lunch. Spikey was a bad dog, barking at Phillip and carrying on. I finally had to crate him. And Avery kept screaming for French fries. Darn animals. It is nice to have people come over to see me. I don’t feel quite so secluded from the world. Kai called after German class and said he was not ready to do full days yet, so I had Bryan go pick him up when he got off work. I told him that he can do half day tomorrow, but next week, he needs to get back to full days. He is no longer coming home and taking a nap or lying down; he just plays on the computer. If he can do that, then he can sit and concentrate at school.
Kai and I got our tickets in the mail today for Avenged Sevenfold & Buckcherry!!!!! We are both so excited. I had promised him I would take him to a concert, but I wanted it to be one that I would also enjoy and wasn’t too expensive, so I found out that Buckcherry was coming to the Coliseum here in Bloomington, I was thrilled. The Coliseum is pretty small so it doesn’t matter where your seats are, because anywhere is a decent sit. AND, the tickets were only like $32.50 a piece + fees, etc. That is a great price for tickets to a concert in a small venue like this. So I ordered them. It was even better when it let me use all my 13,000+ points on my American Express card to pay for the tickets. Ended up only costing me $17+. Kai is pretty excited too. Everyday he comes home and tells me of another kid at school who is going to the concert. See, mom knows how to ROCK!!!!!!
I called Dr Bridwell’s office to see if we could get an appt to see him on Oct 15th (when we see Sharkey) or Oct 16th (when we see Moon), but he was not available either one of those days, but could see us on Oct 17th. Sorry, we are not staying in St Louis for 3 days and having the kids miss that much school and Bryan miss 3 more days of work. So, I called Pegram's office and explained to them that it is time for 6 month follow up on spine for scoliosis and now that we know we have LDS, then both kids should really be evaluated/x-rayed for Arnold-Chiari Malformation, which is an instability in the cervical spine, like at C1 – C3 or 4. I’ve always said that the headaches I have and the neck pain that I have has always been from a misalignment in my cervical spine, so I am also going to ask to have those x-rays or whatever is the best way to see it. I think I would rather do an MRI since there is no radiation and God knows I have had plenty of that lately. We had already been told once, last year, about Linnea having instability in her cervical spine by the Spinal Institute over in Champaign, but when they did a CT scan, they said all was ok. However, that was taken w/ a straight neck, not flexed or extended, which is the only way to check for Chiari. She wants us to go back to Champaign since we can’t get into Bridwell, so I told her I would go as long as we saw Herford and not Osterburg who is just a physician’s assistance. I am not dealing w/ less than board certified, licensed full physicians anymore. Well, we can’t get in to see him until Oct 31st. So, I think either later today or tomorrow, I am going to call Bridwell’s office and see if they will order the necessary films for up here, we can have them done and mailed to him, have him read them and if they are significantly different than 6 months ago, then we will spend the 3 days down there if we have to. But if they are not significantly different, then I think following up w/ Herford is fine. I just don’t want to get too many people involved, but going to St Louis so many times is getting really expensive and time consuming. So, I’m torn. I don’t even know if Bridwell will agree to do this or not.
I have joined the Loeys-Dietz Syndrome Foundation and have now posted and emailed a couple of people. I do feel better about not being alone in this. I really think we can help each other get thru all that lies ahead of each of us and our families. Everyone is very supportive and a genetic counselor who works w/ Dr Dietz is on the forums too and comments often. I think it will be a good resource for us.
Other than all that, not sure if I have a whole lot to say. I am spending my days trying to learn more about the internet, myspace pages, HTML, and the sort. Man, it is so hard to keep up w/ Technology today when it is developing so quickly. Linnea’s cold is getting better. The weather has really cooled off this week. I still have the A/C on, but it hasn’t run in days. Heck, this morning when I woke up, it was 67 degrees in here. That’s ok, I sleep better in the cold and frankly, since it has cooled off, I don’t spend all days swimming in my sweat. Or maybe, I am finally getting rid of all those nasty hospital drugs and starting to get back to normal. My feet are always freezing, so maybe I am getting back to normal.
Gonna watch some movies later: Mamas Boy, Ironman, and Witless Protection. Tonight is the Vice Presidential debate. Ho Hum. I know I should be interested, but I just can’t bring myself to it. Well, let’s see if the rumors about Biden are true….will he withdraw from the vice presidential nomination and give it to Hilary? How will Palin do? Will she put up an intelligent fight? Or come out looking like an amatuer all bruised? As far as I am concerned it is just the lessor of all the evils. There really are no good options at this point. There needs to be someone who has been a successful business person who is well respected and rightfully so….earned it the old fashioned way. That’s the person we need in the White House to balance the budget, control our enemies, leverage our allies, tighten our borders, & utilize all Americans to unite and strengthen our country. I am not sure who that is since I am not up on the financial/business reports. Do any of you have any good ideas?
Sunday was my birthday. I think I slept in a little. My mom called and said she was going to come up for a few hours. She got here a little after noon I think. Bryan and Linnea had gone out for some last minute shopping. When they got back, my mom was already here. Since Kai had copped onto my chenille blanket, Bryan and Linnea picked out a new one for me. This one is like a soft fleece and is twin sized so it will come up clear around my neck and will still cover my feet. I also got some new little speakers for my laptop. The speakers on my laptop aren’t that loud and Kai had found a decent little pair at Dollar General, so I thought they would work pretty good on my laptop. They also got me a Halloween shirts that says “Ladies Night” w/ a witch flying across the sky and the smoke from her broom lights up when you move. It’s funny. I told them that means I will have to go out w/ the girls to celebrate Halloween. Sounds like the perfect excuse for a night on the town.
Joanne & Johanna Barnes (from my Marfans group) came over around 2:30 and brought a couple of pizzas, salad, and ice cream for us. They also brought Kai & I books and Linnea a movie, some Ty beanie babies and few other things. They are so thoughtful. We had a good chat and laughs. I think that is the night we watched “What Happens in Vegas” w/ Ashton Kutcher and Cameron Diaz. That was pretty funny. Then of course, was the opening episode of the new season of Desperate Housewives. Wow, what a shock that one was. I didn’t think we would have shot forward 5 years! That’s an awful lot of time unaccounted for……probably a couple of season’s worth. Then it was the new season of Brothers & Sisters. It was a good day.
Monday, Bryan went back to work, so I have to be up now at 6:30 to make sure Linnea gets up and gets ready for school. Kai is still doing half days at school. Monday morning was hard for me. I didn’t have anyone here w/ me and I really hate being alone. My mind wanders to dark places and I don’t like going there. I’m going to have to figure out what will distract me and keep me on the bright side to help the healing. I spent most of the day surfing the net for information & people related to Loeys-Dietz. Again, I think we are very lucky having such minor symptoms/characteristics. There are so many more people out there who have more of the symptoms and more severe.
Tuesday was more of the same. Wednesday wasn’t much different either. The only new thing on Wednesday is that I have now started using Silicone strips on my big incision. I had it on for only about 2-3 hours yesterday to see if I was going to be alright w/ it and not have a reaction. All went pretty good. In fact, it actually feels really good on there. It’s like a cushion and prevents things from rubbing up against it, so this may turn out to do double duty. The incisions where my drain tubes were aren’t healed enough yet to put anything on them. In fact the right one still has a thick scab on it. It may be almost another week before that falls off. I had heard that the Silicone strips were the best scar removal thing you could get, but they are VERY expensive. Good thing is they are re-usable. Well, Sloan had some left over from when Emily had a wreck; she gave me enough to cover my big incision and maybe my drain tubes too. That would be great if I could really get this thing to be flat, pale like me, and thin. It may take up to 6 months or more, but it is comfortable, so I don’t mind. I put a bra on for the first time today since the surgery. I figured since I have the silicone strip, it will cushion it and I am hoping that the bra will help me pull my shoulders back and stand up straighter. The pain in my chest, shoulder & neck make me hunch forward and that kills my back, upper and lower and it’s just a vicious cycle. So far, so good, but it’s only been a couple of hours. Not sure if I can do it all day.
Today, Phillip & Mary Kae came over for lunch. Spikey was a bad dog, barking at Phillip and carrying on. I finally had to crate him. And Avery kept screaming for French fries. Darn animals. It is nice to have people come over to see me. I don’t feel quite so secluded from the world. Kai called after German class and said he was not ready to do full days yet, so I had Bryan go pick him up when he got off work. I told him that he can do half day tomorrow, but next week, he needs to get back to full days. He is no longer coming home and taking a nap or lying down; he just plays on the computer. If he can do that, then he can sit and concentrate at school.
Kai and I got our tickets in the mail today for Avenged Sevenfold & Buckcherry!!!!! We are both so excited. I had promised him I would take him to a concert, but I wanted it to be one that I would also enjoy and wasn’t too expensive, so I found out that Buckcherry was coming to the Coliseum here in Bloomington, I was thrilled. The Coliseum is pretty small so it doesn’t matter where your seats are, because anywhere is a decent sit. AND, the tickets were only like $32.50 a piece + fees, etc. That is a great price for tickets to a concert in a small venue like this. So I ordered them. It was even better when it let me use all my 13,000+ points on my American Express card to pay for the tickets. Ended up only costing me $17+. Kai is pretty excited too. Everyday he comes home and tells me of another kid at school who is going to the concert. See, mom knows how to ROCK!!!!!!
I called Dr Bridwell’s office to see if we could get an appt to see him on Oct 15th (when we see Sharkey) or Oct 16th (when we see Moon), but he was not available either one of those days, but could see us on Oct 17th. Sorry, we are not staying in St Louis for 3 days and having the kids miss that much school and Bryan miss 3 more days of work. So, I called Pegram's office and explained to them that it is time for 6 month follow up on spine for scoliosis and now that we know we have LDS, then both kids should really be evaluated/x-rayed for Arnold-Chiari Malformation, which is an instability in the cervical spine, like at C1 – C3 or 4. I’ve always said that the headaches I have and the neck pain that I have has always been from a misalignment in my cervical spine, so I am also going to ask to have those x-rays or whatever is the best way to see it. I think I would rather do an MRI since there is no radiation and God knows I have had plenty of that lately. We had already been told once, last year, about Linnea having instability in her cervical spine by the Spinal Institute over in Champaign, but when they did a CT scan, they said all was ok. However, that was taken w/ a straight neck, not flexed or extended, which is the only way to check for Chiari. She wants us to go back to Champaign since we can’t get into Bridwell, so I told her I would go as long as we saw Herford and not Osterburg who is just a physician’s assistance. I am not dealing w/ less than board certified, licensed full physicians anymore. Well, we can’t get in to see him until Oct 31st. So, I think either later today or tomorrow, I am going to call Bridwell’s office and see if they will order the necessary films for up here, we can have them done and mailed to him, have him read them and if they are significantly different than 6 months ago, then we will spend the 3 days down there if we have to. But if they are not significantly different, then I think following up w/ Herford is fine. I just don’t want to get too many people involved, but going to St Louis so many times is getting really expensive and time consuming. So, I’m torn. I don’t even know if Bridwell will agree to do this or not.
I have joined the Loeys-Dietz Syndrome Foundation and have now posted and emailed a couple of people. I do feel better about not being alone in this. I really think we can help each other get thru all that lies ahead of each of us and our families. Everyone is very supportive and a genetic counselor who works w/ Dr Dietz is on the forums too and comments often. I think it will be a good resource for us.
Other than all that, not sure if I have a whole lot to say. I am spending my days trying to learn more about the internet, myspace pages, HTML, and the sort. Man, it is so hard to keep up w/ Technology today when it is developing so quickly. Linnea’s cold is getting better. The weather has really cooled off this week. I still have the A/C on, but it hasn’t run in days. Heck, this morning when I woke up, it was 67 degrees in here. That’s ok, I sleep better in the cold and frankly, since it has cooled off, I don’t spend all days swimming in my sweat. Or maybe, I am finally getting rid of all those nasty hospital drugs and starting to get back to normal. My feet are always freezing, so maybe I am getting back to normal.
Gonna watch some movies later: Mamas Boy, Ironman, and Witless Protection. Tonight is the Vice Presidential debate. Ho Hum. I know I should be interested, but I just can’t bring myself to it. Well, let’s see if the rumors about Biden are true….will he withdraw from the vice presidential nomination and give it to Hilary? How will Palin do? Will she put up an intelligent fight? Or come out looking like an amatuer all bruised? As far as I am concerned it is just the lessor of all the evils. There really are no good options at this point. There needs to be someone who has been a successful business person who is well respected and rightfully so….earned it the old fashioned way. That’s the person we need in the White House to balance the budget, control our enemies, leverage our allies, tighten our borders, & utilize all Americans to unite and strengthen our country. I am not sure who that is since I am not up on the financial/business reports. Do any of you have any good ideas?
Friday, September 26, 2008
The last few days.......
Monday I got my stitches out. I was surprised. It didn’t even hurt. After they were out, it was easier standing up. It definitely felt better. But, later that night, I noticed yellow stuff all over the front of my shirt. So, I unbuttoned my shirt and noticed that the incision on the right where my stitches had just been removed was leaking out this bright yellow yuk. So, I cleaned it out w/ hydrogen peroxide and put some triple antibiotic on it.
Tuesday, I went to my primary care physician. She prescribed an antibiotic ointment to put on the incision. My blood pressure was still too high and my heart rate is still in the upper 90’s resting, so she added 25mg of Toporol XL in the mornings w/ my current Cozaar and I am still to take the 25mg of Toporol XL at night too. Other than the infection and my blood pressure still not under control, she thought I was doing pretty well. Later that evening I went to Walgreens to pick up my Rx and when I got home and opened up the bag, it was not the same generic that I had been using (of the Toporol XL). It had the same first name (Metopolol) but it had a different last name (Tartrate, not Succinate), so I called them back. The pharmacist said what I was given was a generic of LoPressure, not a generic of Toporol XL. I explained to him that the doctor intended to give me the same as what I had, but just double the number since I was supposed to take it in the morning as well as the evening. He explained he thought what had happened is when the doctor writes the Rx, they use a program on the computer that has a drop down menu and these two drugs are probably right next to each other and the wrong one was chosen. He said he would call the doctor’s office the next day and get it cleared up.
On Wednesday morning, I realized that my Dr was not going to be in the office for the rest of the week, so I called and spoke to the nurse. I explained to her what I was told by the pharmacist and asked her if she could please call Walgreens and get it straightened out and ask them to refund my money for the wrong Rx since it was not my fault I was given the wrong one. She said she would. A few minutes later, she called me back and said it had been taken care of and they would refund my money when I brought back the med and the receipt. So, that night, Bryan and I went to Walgreens got the med exchanged, my money refunded then got my refund on the Cozaar since they finally got that to go thru. It actually went fairly smoothly. I was quite surprised.
Once I started this new Rx regimen, my blood pressure did come down to a more acceptable level, but my heart rate really didn’t do much. It was still too high. Braverman’s office called me on Thursday morning and I told them that my primary care physician added the 25mg in the morning to try to get my blood pressure back down to an acceptable level, but that it still had not done anything for my heart rate. The nurse said she would talk to Braverman and call me back. In the meantime, Bryan got a phone call from Linnea’s school, she was sick. So, he went to pick her up and bring her home. She has been having a lot of sinus drainage and now starting to cough. Later that afternoon, the nurse from Braverman’s office called me back and said he wanted me to have an EKG. So, I went to Carle Clinic and had that done. They said they would fax it to Braverman and send it to my primary care physician and I would hear from them. After that, I talked Bryan into taking me to Culvers for my Chocolate custard with hot fudge on top. Yummy! I just received a call from Braverman's office saying that all was ok w/ the EKG. I keep telling myself that maybe it is just my heart healing and once it has healed enough, it will get back to what was “normal” before the surgery.
I was fixing my Cream of Wheat this morning and got very short of breath and feeling kind of sick, but made it thru. Once I sat down and ate it, I felt so much better. I am hoping that I just needed some food in my stomach. But somehow, I just get the feeling that something just isn’t quite right. Again, it’s just my body doing its own thing and not paying attention to any of the “normal” things bodies are supposed to do after this kind of surgery. As I have always said, if there is any exception to any medical rule, I will be it.
Yesterday was Bryan’s 43rd birthday. I was very happy to see it. Everything I took for granted before the surgery, now seems like such a big deal. I just really didn’t think that I would make it to see another birthday for Bryan, myself, my kids or anyone. I am just so thankful to be alive. I just don’t think anyone knows how very lucky I am to live to see another day. Bryan and I had decided we would do our celebrating on Friday night or Saturday since his birthday was on Thursday and mine is this Sunday. We picked out a cake at Walmart that says, “Don’t worry, I am just here for the cake.” It’s not really true, but we all LOVE the cakes at Walmart w/ the Buttercream icing and can’t wait to dig in! This truly will be the best birthday ever, no matter how it is celebrated, because I am here to see it!
Today is Phillip’s birthday and he, Shauna, and Stacey came to have lunch w/ me today. It was so nice to have my good friends here w/ me. I really miss seeing them at work everyday. I so want to go to Gill Street w/ Phillip and Shauna to help Phillip celebrate, but I am just so afraid I will get too hot or be in too much pain to enjoy our time together. Well, maybe we can celebrate closer to Shauna’s birthday in October. I guess that will be my goal to shoot for, be well enough to go out to celebrate Shauna’s birthday. And it is a big one for her anyway (I’ll be nice and not tell you which big one it is).
I got the first hint of what Kai’s medical bills will be. I don’t think this total includes any of the doctor’s charges, just the hospital, but it is $60,681. I was guessing at least $50K, so I guess I wasn’t too far off. I wonder how much mine will be. Bryan was just saying last night how lucky we are to have good health insurance, otherwise we would go broke w/ medical bills. I agree, I may have to fight to get things paid and get things straightened out, but at least we have it and we both have jobs. I pray that we will both always have good jobs w/ good insurance so we can at least pay our bills and take care of our medical needs.
Oh, I forgot to tell you, Monday night, I started searching on Google Blog search for Loeys-Dietz. My blog came up about 4th on the list, but I did find a couple of others that were rather interesting. I found a little boy about 6 or so w/ Loeys-Dietz and he has many more problems than we do. I signed his guestbook and told his mother that she was not alone in this lifelong journey and to contact me if she wanted to talk. I also found another guy in England who just found out that he has Loeys-Dietz and surprisingly enough, the doctors over there were not that concerned w/ the fact that his aortic root was already at 6cm! OMG! Can you believe that? 6cm! He is lucky to be alive. Again, glad I live in the U.S.A and have good insurance. Sounded to me like they were taking their sweet time getting him to surgery. I can’t imagine being at 6cm and not rushing him to have surgery. I think he is very lucky to be alive. I wonder if he realizes how lucky he is.
Tomorrow Linnea has her bowling league. I am going to try to go, but will just have to wait and see how I feel. She has grown so much that we need to have her ball plugged and re-drilled again because her hand has grown so much. She just got that ball for Christmas 2006 and we had it drilled then to fit her, then we had the thumb hole plugged and re-drilled, now we have to have all the holes plugged and drilled again. Man! She is just growing so fast. I am anxious to get back to coaching on Saturday mornings. She is now in the Bantam League, no more bumpers and now she bowls 2 games instead of just one. She’s been doing pretty good so far I think. She just needs to concentrate and listen to what she is being told to do and she would do so much better, but she’s a kid. You know how kids are. I can only hope that she will take it serious sometime soon since it will be one of the few sports she will be able to participate in.
Ok, enough for now. Ta Ta!
Tuesday, I went to my primary care physician. She prescribed an antibiotic ointment to put on the incision. My blood pressure was still too high and my heart rate is still in the upper 90’s resting, so she added 25mg of Toporol XL in the mornings w/ my current Cozaar and I am still to take the 25mg of Toporol XL at night too. Other than the infection and my blood pressure still not under control, she thought I was doing pretty well. Later that evening I went to Walgreens to pick up my Rx and when I got home and opened up the bag, it was not the same generic that I had been using (of the Toporol XL). It had the same first name (Metopolol) but it had a different last name (Tartrate, not Succinate), so I called them back. The pharmacist said what I was given was a generic of LoPressure, not a generic of Toporol XL. I explained to him that the doctor intended to give me the same as what I had, but just double the number since I was supposed to take it in the morning as well as the evening. He explained he thought what had happened is when the doctor writes the Rx, they use a program on the computer that has a drop down menu and these two drugs are probably right next to each other and the wrong one was chosen. He said he would call the doctor’s office the next day and get it cleared up.
On Wednesday morning, I realized that my Dr was not going to be in the office for the rest of the week, so I called and spoke to the nurse. I explained to her what I was told by the pharmacist and asked her if she could please call Walgreens and get it straightened out and ask them to refund my money for the wrong Rx since it was not my fault I was given the wrong one. She said she would. A few minutes later, she called me back and said it had been taken care of and they would refund my money when I brought back the med and the receipt. So, that night, Bryan and I went to Walgreens got the med exchanged, my money refunded then got my refund on the Cozaar since they finally got that to go thru. It actually went fairly smoothly. I was quite surprised.
Once I started this new Rx regimen, my blood pressure did come down to a more acceptable level, but my heart rate really didn’t do much. It was still too high. Braverman’s office called me on Thursday morning and I told them that my primary care physician added the 25mg in the morning to try to get my blood pressure back down to an acceptable level, but that it still had not done anything for my heart rate. The nurse said she would talk to Braverman and call me back. In the meantime, Bryan got a phone call from Linnea’s school, she was sick. So, he went to pick her up and bring her home. She has been having a lot of sinus drainage and now starting to cough. Later that afternoon, the nurse from Braverman’s office called me back and said he wanted me to have an EKG. So, I went to Carle Clinic and had that done. They said they would fax it to Braverman and send it to my primary care physician and I would hear from them. After that, I talked Bryan into taking me to Culvers for my Chocolate custard with hot fudge on top. Yummy! I just received a call from Braverman's office saying that all was ok w/ the EKG. I keep telling myself that maybe it is just my heart healing and once it has healed enough, it will get back to what was “normal” before the surgery.
I was fixing my Cream of Wheat this morning and got very short of breath and feeling kind of sick, but made it thru. Once I sat down and ate it, I felt so much better. I am hoping that I just needed some food in my stomach. But somehow, I just get the feeling that something just isn’t quite right. Again, it’s just my body doing its own thing and not paying attention to any of the “normal” things bodies are supposed to do after this kind of surgery. As I have always said, if there is any exception to any medical rule, I will be it.
Yesterday was Bryan’s 43rd birthday. I was very happy to see it. Everything I took for granted before the surgery, now seems like such a big deal. I just really didn’t think that I would make it to see another birthday for Bryan, myself, my kids or anyone. I am just so thankful to be alive. I just don’t think anyone knows how very lucky I am to live to see another day. Bryan and I had decided we would do our celebrating on Friday night or Saturday since his birthday was on Thursday and mine is this Sunday. We picked out a cake at Walmart that says, “Don’t worry, I am just here for the cake.” It’s not really true, but we all LOVE the cakes at Walmart w/ the Buttercream icing and can’t wait to dig in! This truly will be the best birthday ever, no matter how it is celebrated, because I am here to see it!
Today is Phillip’s birthday and he, Shauna, and Stacey came to have lunch w/ me today. It was so nice to have my good friends here w/ me. I really miss seeing them at work everyday. I so want to go to Gill Street w/ Phillip and Shauna to help Phillip celebrate, but I am just so afraid I will get too hot or be in too much pain to enjoy our time together. Well, maybe we can celebrate closer to Shauna’s birthday in October. I guess that will be my goal to shoot for, be well enough to go out to celebrate Shauna’s birthday. And it is a big one for her anyway (I’ll be nice and not tell you which big one it is).
I got the first hint of what Kai’s medical bills will be. I don’t think this total includes any of the doctor’s charges, just the hospital, but it is $60,681. I was guessing at least $50K, so I guess I wasn’t too far off. I wonder how much mine will be. Bryan was just saying last night how lucky we are to have good health insurance, otherwise we would go broke w/ medical bills. I agree, I may have to fight to get things paid and get things straightened out, but at least we have it and we both have jobs. I pray that we will both always have good jobs w/ good insurance so we can at least pay our bills and take care of our medical needs.
Oh, I forgot to tell you, Monday night, I started searching on Google Blog search for Loeys-Dietz. My blog came up about 4th on the list, but I did find a couple of others that were rather interesting. I found a little boy about 6 or so w/ Loeys-Dietz and he has many more problems than we do. I signed his guestbook and told his mother that she was not alone in this lifelong journey and to contact me if she wanted to talk. I also found another guy in England who just found out that he has Loeys-Dietz and surprisingly enough, the doctors over there were not that concerned w/ the fact that his aortic root was already at 6cm! OMG! Can you believe that? 6cm! He is lucky to be alive. Again, glad I live in the U.S.A and have good insurance. Sounded to me like they were taking their sweet time getting him to surgery. I can’t imagine being at 6cm and not rushing him to have surgery. I think he is very lucky to be alive. I wonder if he realizes how lucky he is.
Tomorrow Linnea has her bowling league. I am going to try to go, but will just have to wait and see how I feel. She has grown so much that we need to have her ball plugged and re-drilled again because her hand has grown so much. She just got that ball for Christmas 2006 and we had it drilled then to fit her, then we had the thumb hole plugged and re-drilled, now we have to have all the holes plugged and drilled again. Man! She is just growing so fast. I am anxious to get back to coaching on Saturday mornings. She is now in the Bantam League, no more bumpers and now she bowls 2 games instead of just one. She’s been doing pretty good so far I think. She just needs to concentrate and listen to what she is being told to do and she would do so much better, but she’s a kid. You know how kids are. I can only hope that she will take it serious sometime soon since it will be one of the few sports she will be able to participate in.
Ok, enough for now. Ta Ta!
Monday, September 22, 2008
Staying the Course.
Again, I slept pretty good last night. Extended my meds to every 6 hours, so only had to wake up at like 12:30 & 3:00, then 6:00 (which is pretty close to getting up time anyway). After I took my 6am dose, I did end up going back to sleep until about 8:30.
I am back to my old freaky dreaming ways. The first dream I had was either about Trace Adkins or Kenny Chesney (which one it was I have no idea since I don’t like country music anyway). The second one was about me working for a daycare in Sullivan located in the old Marathon gas station (which my sister and ex-brother-in-law used to own and I worked there for a short period of time) and there was a tornado coming. There was a secret underground area that you could access from the 3rd locker located between the gas pumps (totally not true, but real in my dream). If you know me and you have heard about my dreams, you know that my dreams go on all night long and are very vivid and very active. I wake up and can remember 90% of the dreams I have had and can recall them in detail. That is part of my sleeping problem. I spend all night dreaming and not enough time in the deep sleep. The doctors will tell you that REM is the most restfull sleep, but if you sleep like I do, you wake up exhausted because you have lived out your dreams all night long. My brother has the same problem and takes multiple drugs to overcome dreaming. Isn’t that weird that he and I both have the exact same sleeping problem? I don’t know if my dad was that way or not. I don’t think he and I ever discussed it. I’ll have to ask my brother if he and Daddy ever talked about it.
Bryan took Spike to the Vet today. Spikey was so excited to get to ride in the van, but by the time they had passed Steak N Shake, he was already starting to pant heavily. By the time they were in front of Linnea’s school, he had figured out where he was going and had started to shake and shiver. Poor Spike, he doesn’t like going to the vet. Every time he goes there, they either cut off his balls or stick him w/ needles. Do you blame him? Bryan said by the time they got there, he was so scared he could hardly contain himself. He always gets him out of the van and lets him go potty before they go in and Spikey thinks it is his last chance to escape, but he finds the end of the leash everytime! Zoinks! He just got his shots today and nails cut and filed. He was pretty worn out when he got home. But they all say he is a wonderful little dog.
I got the call from Dr Sharkey’s office today. She can’t see Kai on the 16th when we are down there to see my surgeon, Dr Moon, but she can see him on the 15th and we can stay overnight. So, 2 more days of work for Bryan to miss and the cost of another overnight stay. She also wants to see Linnea since it will have been 6 months since she saw her last. Both will get another Echo before they see her. Kai is able to start ½ days at school starting on Wednesday the 24th. I am not sure how many days for ½ days until he can go full days. They were going to call the school to get a fax number to fax something over to them so I guess I will call the school tomorrow and see what they have received and what it says. He is to still be out of PE and no lifting/carrying of books. Kai is happy about being able to go back to school.
Dr Braverman’s office called me today and said he said he doesn’t need to see me for 6 months, so I asked, “6 months from the last time he saw me in the office or 6 months from surgery?” She wasn’t for sure so she was going to ask and let me know. He wasn’t available the week of Spring Break, so it looks like for that visit, I will have to have someone lined up to be here for Kai and Linnea.
I didn’t get my walk in today. I walked out to the mailbox and it was just too hot. By the time I got back into the house, I was worn out and huffing and puffing. I’ll try again tomorrow.
I ordered a refill of my Cozaar today and they said it would be an hour. I had Bryan go to pick it up 3 ½ hours later and he calls me and says I need to call them and find out why it won’t go thru. They are telling him that Dr Braverman is listed as an “unauthorized” doctor to prescribe medications. OMG! I am so sick of this crap. I just went thru this the last 2 friggin months and they agreed to put a permanent override on this prescription so I wouldn’t have to go thru it again. A lot of good that did. I sure hope Merck approves the request for free medication. I’m sick of going thru this crap. I guess I will be making another call to Health Alliance tomorrrow. They need to authorize my visits and prescriptions to Braverman for a year at a time. I just don’t have the patience to deal w/ this pettiness anymore. No wonder I have high blood pressure!!!!!!!!!!!!!!!!!!!!!!! I wish I had more money than I knew what to do with and that way I could go to whoever I wanted to go thru and not have to worry about having anyone approve or authorize anything and I could have prescriptions filled by any doctor I see.
Well, now that I am all worked up, I am going to get off here, so I can try to forget about this and settle down before it is time to go to bed. Maybe a little meditation is in order…………OHMMMMMM, OHMMMMMM, OHMMMM.
I am back to my old freaky dreaming ways. The first dream I had was either about Trace Adkins or Kenny Chesney (which one it was I have no idea since I don’t like country music anyway). The second one was about me working for a daycare in Sullivan located in the old Marathon gas station (which my sister and ex-brother-in-law used to own and I worked there for a short period of time) and there was a tornado coming. There was a secret underground area that you could access from the 3rd locker located between the gas pumps (totally not true, but real in my dream). If you know me and you have heard about my dreams, you know that my dreams go on all night long and are very vivid and very active. I wake up and can remember 90% of the dreams I have had and can recall them in detail. That is part of my sleeping problem. I spend all night dreaming and not enough time in the deep sleep. The doctors will tell you that REM is the most restfull sleep, but if you sleep like I do, you wake up exhausted because you have lived out your dreams all night long. My brother has the same problem and takes multiple drugs to overcome dreaming. Isn’t that weird that he and I both have the exact same sleeping problem? I don’t know if my dad was that way or not. I don’t think he and I ever discussed it. I’ll have to ask my brother if he and Daddy ever talked about it.
Bryan took Spike to the Vet today. Spikey was so excited to get to ride in the van, but by the time they had passed Steak N Shake, he was already starting to pant heavily. By the time they were in front of Linnea’s school, he had figured out where he was going and had started to shake and shiver. Poor Spike, he doesn’t like going to the vet. Every time he goes there, they either cut off his balls or stick him w/ needles. Do you blame him? Bryan said by the time they got there, he was so scared he could hardly contain himself. He always gets him out of the van and lets him go potty before they go in and Spikey thinks it is his last chance to escape, but he finds the end of the leash everytime! Zoinks! He just got his shots today and nails cut and filed. He was pretty worn out when he got home. But they all say he is a wonderful little dog.
I got the call from Dr Sharkey’s office today. She can’t see Kai on the 16th when we are down there to see my surgeon, Dr Moon, but she can see him on the 15th and we can stay overnight. So, 2 more days of work for Bryan to miss and the cost of another overnight stay. She also wants to see Linnea since it will have been 6 months since she saw her last. Both will get another Echo before they see her. Kai is able to start ½ days at school starting on Wednesday the 24th. I am not sure how many days for ½ days until he can go full days. They were going to call the school to get a fax number to fax something over to them so I guess I will call the school tomorrow and see what they have received and what it says. He is to still be out of PE and no lifting/carrying of books. Kai is happy about being able to go back to school.
Dr Braverman’s office called me today and said he said he doesn’t need to see me for 6 months, so I asked, “6 months from the last time he saw me in the office or 6 months from surgery?” She wasn’t for sure so she was going to ask and let me know. He wasn’t available the week of Spring Break, so it looks like for that visit, I will have to have someone lined up to be here for Kai and Linnea.
I didn’t get my walk in today. I walked out to the mailbox and it was just too hot. By the time I got back into the house, I was worn out and huffing and puffing. I’ll try again tomorrow.
I ordered a refill of my Cozaar today and they said it would be an hour. I had Bryan go to pick it up 3 ½ hours later and he calls me and says I need to call them and find out why it won’t go thru. They are telling him that Dr Braverman is listed as an “unauthorized” doctor to prescribe medications. OMG! I am so sick of this crap. I just went thru this the last 2 friggin months and they agreed to put a permanent override on this prescription so I wouldn’t have to go thru it again. A lot of good that did. I sure hope Merck approves the request for free medication. I’m sick of going thru this crap. I guess I will be making another call to Health Alliance tomorrrow. They need to authorize my visits and prescriptions to Braverman for a year at a time. I just don’t have the patience to deal w/ this pettiness anymore. No wonder I have high blood pressure!!!!!!!!!!!!!!!!!!!!!!! I wish I had more money than I knew what to do with and that way I could go to whoever I wanted to go thru and not have to worry about having anyone approve or authorize anything and I could have prescriptions filled by any doctor I see.
Well, now that I am all worked up, I am going to get off here, so I can try to forget about this and settle down before it is time to go to bed. Maybe a little meditation is in order…………OHMMMMMM, OHMMMMMM, OHMMMM.
Sunday, September 21, 2008
Ups & Downs, but more Ups than Downs, I think
Well, the last post was on Wednesday. Thursday was not quite as good, but still not too bad. Friday, I had even less energy than Thursday. I think I only managed to make it down the driveway to the mailbox once on Friday and was completely worn out after that.
Kai had his echo on Thursday. The tech said that the doctors were looking for some fluid build up around the heart as a possible cause of the increased heart rate. She said she didn’t see anything, but we would hear the official word from the doctors. We have not heard from them, but I am assuming no news is good news. His heart rate during the echo was in the 70’s, so really not sure why it was so high on Wednesday. He has been taking his medicine, so perhaps it is just going to take time to let our hearts get back to “normal”.
I am back up to my regular dosage on my Cozaar (Losartin) and Toporol, but my heart rate is still in the 90’s most of the time and my blood pressure is still a little high. I called Dr Braverman’s office (my cardiologist) on Friday to find out when I need to go back to see him and if it was going to be anytime soon, could it be Oct 16th since we are going to be down there to see Dr Moon anyway. I had to leave a message and they said they would get back to me. I also called Dr Huddleston’s office (Kai’s surgeon) and they said he did not need to see Kai again. Kai’s follow ups would be w/ his Cardiologist (Dr Sharkey) and if she had any concerns, she would discuss w/ Huddleston. So, I called Sharkey’s office. She was out, but Barb from there said she would talk to her on Monday and call me back to let me know when Kai needs to see her. The message I left them was also to try to make it for Oct 16th so we would not have to make more trips.
I ended up going to a strict every 4 hour schedule for Ibuprofen & Tylenol, day and night and it seems to have kept my pain under control. And now that I am back on my Skelaxin during the day (muscle relaxer, non-drowsy) and Zanaflex (another muscle relaxer that helps me sleep) at night, I haven’t had too much problems w/ muscle spasms. It’s nice to be back on MY schedule. I think getting all those nasty hospital drugs out of my system and back on what works for me has made all the difference in the world. I certainly am sleeping better; despite having to wake up every 2 hours or so to take meds in the middle of the night. Bryan has been setting a timer and I have my meds already dosed out and in little medicine cups stacked inside of each other. So, when the timer goes off, I just reach over and grab the cups and tip it up, whatever is I the top one, I get and then put that cup on the bottom and wait for the next ding of the timer.
Friday, the visiting nurse came again and said I was still doing fine and inscission and stitches are still ok. I am supposed to get my 2 stitches out (where my drain tubes were) on Monday. I told her to ask whoever that nurse will be to make the appointment for no earlier than 10am as the mornings are the hardest for me. I still wake up stiff and feel a bit heavy in the lungs, but it is getting easier every day. I asked her if she knew of any place that would loan out wheelchairs. She said to try Life CIL. I found it in the phonebook as Life Center for Independent Living and called them. They were so nice. Bryan went to pick up a wheelchair (actually a companion chair, no big wheels in the back, someone has to push you, which is ok because I don’t have the strength to push myself anyway). He came back w/ that and a shower chair w/ a back, so I don’t have to stand up if I don’t want to. It is more relaxing sitting down and I don’t have to worry about falling when I bend over. They loan out equipment for 3 months at a time, so I don’t have to worry about getting it back anytime soon. That is a big relief. At least now, I can go out and not worry about wearing myself out.
Saturday, we took the kids to the old airport and Prairie Aviation Museum for “A Day at the Airport”. We had a blast. We got there at 8:30 for a pancake and sausage breakfast and then we headed over to the old airport to the EAA hanger. They were giving free airplane rides to kids. Linnea has never ridden on an airplane and we missed this opportunity back in the spring, we got there too late that day. I wasn’t about to miss it this time. I wanted her to get to take a ride in a plane. We got there (had to fib about her age, needed to be 8 to go, but she looks like she is about 11 or 12 anyway), got her signed up and waited for her turn. We got to see several Star Wars characters there. It was kind of funny, one of the Storm Troopers (I think that is what he was anyway, dressed in white, not black) was carrying his weapon and Kai said it looked like a leaf blower. I was cracking up. Linnea got to ride in a Beech Sierra N9193S. It was a little bitty 4 person plane. She sat right behind the pilot and she had a headset and everything. He took them from the airport to Lake Bloomington & Evergreen, not sure where else, then back. They were gone about 25 minutes or so. Linnea said it was the “most awesome thing” she had ever done. She said when he was making a sharp turn, she got a little woozy, but was ok otherwise. After her plane ride, we went back to the Prairie Aviation Museum and went thru there. That was pretty cool, then we went outside and got to see the planes and helicopters that they have there. They had the cockpits open so we got to get up in them. We got a few photos, so I will try to get those posted as well. Kai did pretty well w/ the exception of his right leg just under his butt. It starts hurting him after he has been standing or walking. It was hurting him. We had mentioned it to his pediatrician when we were there on Wednesday, but got sidetracked, so I need to call her back and see if we can get some new spinal x-rays to see if there is a pinched nerve and he needs to have new x-rays anyway to see if his scoliosis has progressed from April. Anyway, when we were done at the Museum, we went back over to the Image Air hanger and was on our way out to the C130 transporter that they had brought in, but it started to rain and they shut it up and fired up the engines and it was getting ready to take off, so we didn’t make it in time to see that. We didn’t get to see the FA-18 either, but maybe next year. The storm blew in pretty quick and before you knew it, it was pouring and lightning and they were still giving helicoptor rides. Glad I had not signed up for that. I really wanted to, but didn’t figure it would be such a good idea only 11 days after surgery. After I saw the lightning, I knew I had made the right decision. The tent they had set up for people to wait under for the helicopter rides blew over the airport fence w/ the high winds. We got to see the C130 take off. As big as that thing is, it took off so gracefully. Amazing! I was able to talk to an officer in the Civil Air Patrol about Kai joining. It sounds like a great opportunity for him and I think it is the closest thing he will get to being in the military (which he really wants to be a pilot in the Air Force). He was also able to talk to a couple of the cadets in Civil Air Patrol about their experience. I doubt that w/ his medical condition, he will ever be able to qualify for a pilot’s license, so I also talked to someone at EAA about the Young Eagles program which introduces kids to flying and pilots donate their time, planes, and fuel to take kids out on flights and teach them some things. It is not flight lessons, but at least gives them the opportunity to experience flying in a close personal situation w/ a licensed pilot. I think he is very excited about both.
Anyway, we had a blast and didn’t get home until about 1:30 or so. It was a long day, but not too tiring surprisingly. Bryan then took Kai to Meijer so he could get the book he has been waiting to come out for the last several months, Brisingr by Christopher Paolini. It is like 750+ pages and he has already read almost 300 pages. Then we watched some movies: Speed Racer & The Bucket List. It was a good day! We didn’t get to bed until about 11:30 which is the latest we have stayed up since we got home. We set the timer again and I took my meds during the night and we didn’t get out of bed until like 10:00 this morning. Needless to say, I was stiff and still heavy in the chest breathing, but got in the shower right away and that hot water makes it all better.
I walked down to the corner w/ Spike, crossed the street and came back home today, then did it again later in the day. Since it is getting easier, I am going to try to increase my distance every day. I’ve got to start burning some calories. Phillip brought over ribs, homemade BBQ sauce, hamburgers, hot dogs, homemade mac & cheese, and homemade coleslaw. OMG! Fabulous! Bryan says he’s ready for Phil’s Grill anytime. We were all in heaven. There was enough there, for lunch and supper the rest of the week. Then today, Stacey brought over a roast, potatoes, rolls, and brownies for dessert. Again, fabulous. Now do you understand why I have to start walking regularly? I had actually lost some weight and was lighter than what I was when I had my surgery, but I have a feeling that won’t last long.
Tomorrow, Bryan is take Spike to the vet for the rest of his shots and I am going to have them trim his toenails as I just don’t have the strength to do it this time. Tuesday @ 2pm, I have a follow up w/ my Primary Care Physician. The visiting nurse said I needed to have a follow up appt w/ her since I don’t go back to see my Surgeon until Oct 16th. Bryan’s birthday is Thursday and mine is next Sunday, so sometime before Thursday, I need to get to Walmart to get Bryan’s present. I already know what I am going to get him, but of course, I will not disclose it on here since he will probably read it. Ha! Ha! Bryan, you will just have to wait! My friends from work may come over one day this week and have lunch w/ me one day, so I am excited. I have extended my meds to every 5 or 6 hours now, so things are looking up.
I have to keep telling myself that even though there are some not-so-good days, there seems to be more good than not-so-good days. I still cry at the drop of a hat when I think about how lucky we are to be alive. It’s one thing to survive as long as I have w/ Loeys-Deitz and a dilated aorta as big as mine was and Kai to have one as big as his, but to have survived these surgeries. It is still very overwhelming. I feel like God has a reason for giving us this disease and allowing us to live thru it, but for the life of me, I don’t know what that reason is. Maybe one day, God will reveal that to me. I only hope I can fulfill that.
Well, keep the prayers coming, please. We are still in need of them.
Thanks, and have a GREAT day!
Later!
Kai had his echo on Thursday. The tech said that the doctors were looking for some fluid build up around the heart as a possible cause of the increased heart rate. She said she didn’t see anything, but we would hear the official word from the doctors. We have not heard from them, but I am assuming no news is good news. His heart rate during the echo was in the 70’s, so really not sure why it was so high on Wednesday. He has been taking his medicine, so perhaps it is just going to take time to let our hearts get back to “normal”.
I am back up to my regular dosage on my Cozaar (Losartin) and Toporol, but my heart rate is still in the 90’s most of the time and my blood pressure is still a little high. I called Dr Braverman’s office (my cardiologist) on Friday to find out when I need to go back to see him and if it was going to be anytime soon, could it be Oct 16th since we are going to be down there to see Dr Moon anyway. I had to leave a message and they said they would get back to me. I also called Dr Huddleston’s office (Kai’s surgeon) and they said he did not need to see Kai again. Kai’s follow ups would be w/ his Cardiologist (Dr Sharkey) and if she had any concerns, she would discuss w/ Huddleston. So, I called Sharkey’s office. She was out, but Barb from there said she would talk to her on Monday and call me back to let me know when Kai needs to see her. The message I left them was also to try to make it for Oct 16th so we would not have to make more trips.
I ended up going to a strict every 4 hour schedule for Ibuprofen & Tylenol, day and night and it seems to have kept my pain under control. And now that I am back on my Skelaxin during the day (muscle relaxer, non-drowsy) and Zanaflex (another muscle relaxer that helps me sleep) at night, I haven’t had too much problems w/ muscle spasms. It’s nice to be back on MY schedule. I think getting all those nasty hospital drugs out of my system and back on what works for me has made all the difference in the world. I certainly am sleeping better; despite having to wake up every 2 hours or so to take meds in the middle of the night. Bryan has been setting a timer and I have my meds already dosed out and in little medicine cups stacked inside of each other. So, when the timer goes off, I just reach over and grab the cups and tip it up, whatever is I the top one, I get and then put that cup on the bottom and wait for the next ding of the timer.
Friday, the visiting nurse came again and said I was still doing fine and inscission and stitches are still ok. I am supposed to get my 2 stitches out (where my drain tubes were) on Monday. I told her to ask whoever that nurse will be to make the appointment for no earlier than 10am as the mornings are the hardest for me. I still wake up stiff and feel a bit heavy in the lungs, but it is getting easier every day. I asked her if she knew of any place that would loan out wheelchairs. She said to try Life CIL. I found it in the phonebook as Life Center for Independent Living and called them. They were so nice. Bryan went to pick up a wheelchair (actually a companion chair, no big wheels in the back, someone has to push you, which is ok because I don’t have the strength to push myself anyway). He came back w/ that and a shower chair w/ a back, so I don’t have to stand up if I don’t want to. It is more relaxing sitting down and I don’t have to worry about falling when I bend over. They loan out equipment for 3 months at a time, so I don’t have to worry about getting it back anytime soon. That is a big relief. At least now, I can go out and not worry about wearing myself out.
Saturday, we took the kids to the old airport and Prairie Aviation Museum for “A Day at the Airport”. We had a blast. We got there at 8:30 for a pancake and sausage breakfast and then we headed over to the old airport to the EAA hanger. They were giving free airplane rides to kids. Linnea has never ridden on an airplane and we missed this opportunity back in the spring, we got there too late that day. I wasn’t about to miss it this time. I wanted her to get to take a ride in a plane. We got there (had to fib about her age, needed to be 8 to go, but she looks like she is about 11 or 12 anyway), got her signed up and waited for her turn. We got to see several Star Wars characters there. It was kind of funny, one of the Storm Troopers (I think that is what he was anyway, dressed in white, not black) was carrying his weapon and Kai said it looked like a leaf blower. I was cracking up. Linnea got to ride in a Beech Sierra N9193S. It was a little bitty 4 person plane. She sat right behind the pilot and she had a headset and everything. He took them from the airport to Lake Bloomington & Evergreen, not sure where else, then back. They were gone about 25 minutes or so. Linnea said it was the “most awesome thing” she had ever done. She said when he was making a sharp turn, she got a little woozy, but was ok otherwise. After her plane ride, we went back to the Prairie Aviation Museum and went thru there. That was pretty cool, then we went outside and got to see the planes and helicopters that they have there. They had the cockpits open so we got to get up in them. We got a few photos, so I will try to get those posted as well. Kai did pretty well w/ the exception of his right leg just under his butt. It starts hurting him after he has been standing or walking. It was hurting him. We had mentioned it to his pediatrician when we were there on Wednesday, but got sidetracked, so I need to call her back and see if we can get some new spinal x-rays to see if there is a pinched nerve and he needs to have new x-rays anyway to see if his scoliosis has progressed from April. Anyway, when we were done at the Museum, we went back over to the Image Air hanger and was on our way out to the C130 transporter that they had brought in, but it started to rain and they shut it up and fired up the engines and it was getting ready to take off, so we didn’t make it in time to see that. We didn’t get to see the FA-18 either, but maybe next year. The storm blew in pretty quick and before you knew it, it was pouring and lightning and they were still giving helicoptor rides. Glad I had not signed up for that. I really wanted to, but didn’t figure it would be such a good idea only 11 days after surgery. After I saw the lightning, I knew I had made the right decision. The tent they had set up for people to wait under for the helicopter rides blew over the airport fence w/ the high winds. We got to see the C130 take off. As big as that thing is, it took off so gracefully. Amazing! I was able to talk to an officer in the Civil Air Patrol about Kai joining. It sounds like a great opportunity for him and I think it is the closest thing he will get to being in the military (which he really wants to be a pilot in the Air Force). He was also able to talk to a couple of the cadets in Civil Air Patrol about their experience. I doubt that w/ his medical condition, he will ever be able to qualify for a pilot’s license, so I also talked to someone at EAA about the Young Eagles program which introduces kids to flying and pilots donate their time, planes, and fuel to take kids out on flights and teach them some things. It is not flight lessons, but at least gives them the opportunity to experience flying in a close personal situation w/ a licensed pilot. I think he is very excited about both.
Anyway, we had a blast and didn’t get home until about 1:30 or so. It was a long day, but not too tiring surprisingly. Bryan then took Kai to Meijer so he could get the book he has been waiting to come out for the last several months, Brisingr by Christopher Paolini. It is like 750+ pages and he has already read almost 300 pages. Then we watched some movies: Speed Racer & The Bucket List. It was a good day! We didn’t get to bed until about 11:30 which is the latest we have stayed up since we got home. We set the timer again and I took my meds during the night and we didn’t get out of bed until like 10:00 this morning. Needless to say, I was stiff and still heavy in the chest breathing, but got in the shower right away and that hot water makes it all better.
I walked down to the corner w/ Spike, crossed the street and came back home today, then did it again later in the day. Since it is getting easier, I am going to try to increase my distance every day. I’ve got to start burning some calories. Phillip brought over ribs, homemade BBQ sauce, hamburgers, hot dogs, homemade mac & cheese, and homemade coleslaw. OMG! Fabulous! Bryan says he’s ready for Phil’s Grill anytime. We were all in heaven. There was enough there, for lunch and supper the rest of the week. Then today, Stacey brought over a roast, potatoes, rolls, and brownies for dessert. Again, fabulous. Now do you understand why I have to start walking regularly? I had actually lost some weight and was lighter than what I was when I had my surgery, but I have a feeling that won’t last long.
Tomorrow, Bryan is take Spike to the vet for the rest of his shots and I am going to have them trim his toenails as I just don’t have the strength to do it this time. Tuesday @ 2pm, I have a follow up w/ my Primary Care Physician. The visiting nurse said I needed to have a follow up appt w/ her since I don’t go back to see my Surgeon until Oct 16th. Bryan’s birthday is Thursday and mine is next Sunday, so sometime before Thursday, I need to get to Walmart to get Bryan’s present. I already know what I am going to get him, but of course, I will not disclose it on here since he will probably read it. Ha! Ha! Bryan, you will just have to wait! My friends from work may come over one day this week and have lunch w/ me one day, so I am excited. I have extended my meds to every 5 or 6 hours now, so things are looking up.
I have to keep telling myself that even though there are some not-so-good days, there seems to be more good than not-so-good days. I still cry at the drop of a hat when I think about how lucky we are to be alive. It’s one thing to survive as long as I have w/ Loeys-Deitz and a dilated aorta as big as mine was and Kai to have one as big as his, but to have survived these surgeries. It is still very overwhelming. I feel like God has a reason for giving us this disease and allowing us to live thru it, but for the life of me, I don’t know what that reason is. Maybe one day, God will reveal that to me. I only hope I can fulfill that.
Well, keep the prayers coming, please. We are still in need of them.
Thanks, and have a GREAT day!
Later!
Wednesday, September 17, 2008
Today was a good one!
Today has been a really good day. It didn’t start out that way since I missed my 4:30am Ibuprofen, so when I woke up I was in a lot of pain and hard to breathe. But, we had to get Kai to his Dr appt w/ his Primary Care Physician at 10am, so I took my Ibuprofen, ate 2 pop tarts & went back to bed for 30 minutes to let it kick in. Then I actually took a shower all by myself (well, except for Bryan washing my back for me) and I stood up the whole time and never got dizzy.
I actually got about 7 hours of sleep last night because of the increased frequency in taking the Ibuprofen and Tylenol in between the Ibuprofens. I took it thru the night. I was amazed I had actually slept that long. Today is Day 8 after my surgery and I have not had more than 3-4 hours of sleep a night since my surgery.
Kai’s pediatrician was surprised that I came to his appointment. She was also very surprised at how well he is doing. But, she thought he looked a little pale and his heart rate is way too high, still over 100 at rest. So, she called Dr Sharkey in St Louis and Dr Sharkey wants another echo done. So, tomorrow we go back to Carle Clinic to have an echo done and the results will go to both the pediatrician and Dr Sharkey. She said I was pretty pale too and she was concerned about me so she had her nurse check my blood pressure, oxygen saturation, and pulse as well. I really like Dr Pegram. It is nice that she is also concerned about me and I am not even her patient. My blood pressure is still high, but I am still building back up to my regular dosage of both my blood pressure meds. I think it will come down, but just may take some time. Plus, if you have pain, your blood pressure tends to shoot up anyway. She says she wants Kai to start taking the Iron & Vitamin C again to build his blood back up. His hemoglobin was borderline low when he was discharged.
I stayed on my med regime and felt really good today. I really didn’t have a whole lot of pain today. I think if I can keep this up and possibly extend the time between dosages, I can get thru this fine. I talked to a friend at work today for quite some time and it felt good. I miss all peeps!!!!!! Shout out to my peeps Then another co-worker stopped by to bring me a power cord for my PDA since it was dead and I couldn’t put any appointments on my calendar. She got to see my scar and Kai’s too as well as meet Linnea, Bryan and Spike. Spike stood guard over me the whole time she was at my house. That funny little dog. I think next week or the week after, some of my friends at work and I are going to have lunch together. I am really excited about that. Stacey said they are signing up for days to bring over dinner for us so Bryan can at least have one less thing to do and worry about. I think that is so nice. He has worked really hard taking care of all of us and keeping up w/ the house.
I just finished getting the photos and videos of my surgery uploaded, so if you are interested, go out and take a look. Again, I have labeled them Graphic and Non-Graphic for those of you who are squeemish. Dr Pegram said she didn’t even want to see them. I thought that was kind of strange for being a doctor. I, personally, think they are so interesting and you can see so much and learn so much from them. I plan to take my computer to St Louis w/ us on October 16th when we go see my surgeon to show him and verify what I am seeing. I am also ordering copies of everything. I want to scan and upload a photo of the heart cath I had done showing my aorta from the root up. You will die laughing. I couldn’t believe it when I saw it. Shelly the anesthesiologist intern cracked up when she saw it too. I am not going to reveal what you will see in it, you will just have to wait (and it may be several weeks before I get it). I am going to ask my surgeon why the heavy set lady is doing so much of the work on me. I think she is a resident/intern. I am not happy about that. I was asked if that was ok. I don’t mind them watching and assisting, but not actually doing. My scar is crooked and she is the one who made the cut!
Today was Kai’s first visit from the Homebound teacher. I don’t think he is too thrilled about it. I think he thought this was going to be a piece of cake and he wouldn’t have to work too hard at it, but he is finding out differently. I told him that if he were going to school, he would be working from 8:30 – 3:30 so there is no reason why he can’t have that schedule here at home. Computer games, etc will have to be after the homework is done. I told the teacher that I would like her to write out exactly what is due the next day so there is no misunderstanding on anyone’s part about what needs to be done. He even admitted to one of his online friends that he can’t wait to get back to school! I bet he won’t say that again anytime soon, probably not till another surgery comes along.
I can’t wait to get back to work either. It’s nice having the time off, but I know by the end of next week, I will hate being home all day and not seeing my friends. I am hoping they will stop by often. I told myself, I would use this time to put the last 13 yrs of photos into photo albums (yes, I said 13 yrs!) I only have up until Kai was about 6 months old into photo albums. I’m horrible about that stuff. I also need to get more things listed on the ALFI to be sold. That would help declutter and God knows we could use the dough now.
Oh, get this……when Kai saw the Orthopedist back in April, they billed Blue Cross/Blue Shield $188. BCBS paid $143 which was the contractual amount. Then the Orthopedist turned around and billed my HMO, Health Alliance, the remaining $45. Health Alliance sent them a denial saying that their contractual amount was even less than what they had already been paid, so no payment was going to be made and the patient is not responsible for the balance. I got billed anyway a couple of months ago. I wrote to the billing company and asked them why I was getting billed, then I called Health Alliance and they said they would take care of it and not to worry about it. I got another bill from them. So, I call the billing company again today. The rep there told me that their legal department told them that they didn’t have to abide by any contractual amount for a secondary insurance. So, I said, “Do you have something in writing you can send me for proof of that?” She said she would transfer me to a supervisor, okay. Then she comes back and says she’ll have to try another one, that one wasn’t at their desk. Then she comes back on after a while and says that she was told to tell me that I would not have to worry about the balance billed. Can you believe that crap! I caught them in their own lies. When push comes to shove, they cowered in the corner. Just goes to show you, you HAVE to stand up for what you believe is right and make people/companies responsible for their actions. I am so fed up w/ dealing w/ insurance crap. It takes so much of my time trying to read their statements, calling the billers, then calling the insurance companies, etc, etc, etc. Why can’t they be like State Farm and pay what they owe. As a claim rep, that is what we were taught. Figure the amount and pay what is owed, no less & get it done in a timely manner.
Ok, so getting late. Gonna go to bed. Looking forward to another good night and good day tomorrow.
Take care everyone!
I actually got about 7 hours of sleep last night because of the increased frequency in taking the Ibuprofen and Tylenol in between the Ibuprofens. I took it thru the night. I was amazed I had actually slept that long. Today is Day 8 after my surgery and I have not had more than 3-4 hours of sleep a night since my surgery.
Kai’s pediatrician was surprised that I came to his appointment. She was also very surprised at how well he is doing. But, she thought he looked a little pale and his heart rate is way too high, still over 100 at rest. So, she called Dr Sharkey in St Louis and Dr Sharkey wants another echo done. So, tomorrow we go back to Carle Clinic to have an echo done and the results will go to both the pediatrician and Dr Sharkey. She said I was pretty pale too and she was concerned about me so she had her nurse check my blood pressure, oxygen saturation, and pulse as well. I really like Dr Pegram. It is nice that she is also concerned about me and I am not even her patient. My blood pressure is still high, but I am still building back up to my regular dosage of both my blood pressure meds. I think it will come down, but just may take some time. Plus, if you have pain, your blood pressure tends to shoot up anyway. She says she wants Kai to start taking the Iron & Vitamin C again to build his blood back up. His hemoglobin was borderline low when he was discharged.
I stayed on my med regime and felt really good today. I really didn’t have a whole lot of pain today. I think if I can keep this up and possibly extend the time between dosages, I can get thru this fine. I talked to a friend at work today for quite some time and it felt good. I miss all peeps!!!!!! Shout out to my peeps Then another co-worker stopped by to bring me a power cord for my PDA since it was dead and I couldn’t put any appointments on my calendar. She got to see my scar and Kai’s too as well as meet Linnea, Bryan and Spike. Spike stood guard over me the whole time she was at my house. That funny little dog. I think next week or the week after, some of my friends at work and I are going to have lunch together. I am really excited about that. Stacey said they are signing up for days to bring over dinner for us so Bryan can at least have one less thing to do and worry about. I think that is so nice. He has worked really hard taking care of all of us and keeping up w/ the house.
I just finished getting the photos and videos of my surgery uploaded, so if you are interested, go out and take a look. Again, I have labeled them Graphic and Non-Graphic for those of you who are squeemish. Dr Pegram said she didn’t even want to see them. I thought that was kind of strange for being a doctor. I, personally, think they are so interesting and you can see so much and learn so much from them. I plan to take my computer to St Louis w/ us on October 16th when we go see my surgeon to show him and verify what I am seeing. I am also ordering copies of everything. I want to scan and upload a photo of the heart cath I had done showing my aorta from the root up. You will die laughing. I couldn’t believe it when I saw it. Shelly the anesthesiologist intern cracked up when she saw it too. I am not going to reveal what you will see in it, you will just have to wait (and it may be several weeks before I get it). I am going to ask my surgeon why the heavy set lady is doing so much of the work on me. I think she is a resident/intern. I am not happy about that. I was asked if that was ok. I don’t mind them watching and assisting, but not actually doing. My scar is crooked and she is the one who made the cut!
Today was Kai’s first visit from the Homebound teacher. I don’t think he is too thrilled about it. I think he thought this was going to be a piece of cake and he wouldn’t have to work too hard at it, but he is finding out differently. I told him that if he were going to school, he would be working from 8:30 – 3:30 so there is no reason why he can’t have that schedule here at home. Computer games, etc will have to be after the homework is done. I told the teacher that I would like her to write out exactly what is due the next day so there is no misunderstanding on anyone’s part about what needs to be done. He even admitted to one of his online friends that he can’t wait to get back to school! I bet he won’t say that again anytime soon, probably not till another surgery comes along.
I can’t wait to get back to work either. It’s nice having the time off, but I know by the end of next week, I will hate being home all day and not seeing my friends. I am hoping they will stop by often. I told myself, I would use this time to put the last 13 yrs of photos into photo albums (yes, I said 13 yrs!) I only have up until Kai was about 6 months old into photo albums. I’m horrible about that stuff. I also need to get more things listed on the ALFI to be sold. That would help declutter and God knows we could use the dough now.
Oh, get this……when Kai saw the Orthopedist back in April, they billed Blue Cross/Blue Shield $188. BCBS paid $143 which was the contractual amount. Then the Orthopedist turned around and billed my HMO, Health Alliance, the remaining $45. Health Alliance sent them a denial saying that their contractual amount was even less than what they had already been paid, so no payment was going to be made and the patient is not responsible for the balance. I got billed anyway a couple of months ago. I wrote to the billing company and asked them why I was getting billed, then I called Health Alliance and they said they would take care of it and not to worry about it. I got another bill from them. So, I call the billing company again today. The rep there told me that their legal department told them that they didn’t have to abide by any contractual amount for a secondary insurance. So, I said, “Do you have something in writing you can send me for proof of that?” She said she would transfer me to a supervisor, okay. Then she comes back and says she’ll have to try another one, that one wasn’t at their desk. Then she comes back on after a while and says that she was told to tell me that I would not have to worry about the balance billed. Can you believe that crap! I caught them in their own lies. When push comes to shove, they cowered in the corner. Just goes to show you, you HAVE to stand up for what you believe is right and make people/companies responsible for their actions. I am so fed up w/ dealing w/ insurance crap. It takes so much of my time trying to read their statements, calling the billers, then calling the insurance companies, etc, etc, etc. Why can’t they be like State Farm and pay what they owe. As a claim rep, that is what we were taught. Figure the amount and pay what is owed, no less & get it done in a timely manner.
Ok, so getting late. Gonna go to bed. Looking forward to another good night and good day tomorrow.
Take care everyone!
Tuesday, September 16, 2008
We are home now.
We are both home now. My mom got Kai Sunday and Bryan & I left the hospital about 3:15 on Monday. We stopped after about 45-50 minutes and got out and walked and I had Bryan massage my back and neck as it was killing me. When we got back in the van, I sat in the 2nd row seats and put the passenger seat all the way down and my legs up on it and a pillow behind my back w/ my neck pillow behind my head. We made it the rest of the way home w/ no more stops. My mom, Linnea, Kai & Spike were anxiously awaiting our arrival. It took Bryan quite a while to carry in all our crap. I rested. Since my back and neck were still killing me, I thought using my TENS unit would help, but it didn’t. I had an emotional breakdown because I couldn’t even do the simplest of things: push the button on the side of my chair to get my leg rest up, reach to put a bottle of lotion away, lay down on the floor. I just feel so helpless. Someone has to do almost everything for me and I just hate that. There are so many things that need to be done and I can’t do them. And, when I am in pain, I can’t function at all. I know I was freaking out Linnea w/ my emotional breakdown. She was very concerned. I felt bad crying in front of her, but I just couldn’t help it. I was in so much pain.
We went to bed around 10pm and didn’t really get to sleep unitl around 1:30 and only slept till 2:30. By 3am, I couldn’t stand it anymore. I had to get up and go to the recliner in the living room. So, Bryan got up and helped me carry all my stuff out there and punch the button on my chair for my leg rest. I think I layed there till about 4:30 then finally got to sleep until about 6:30. So, 3 hours last night.
I had another emotional breakdown after Linnea left for school. Again, I was in so much pain, I just couldn’t do anything. Nothing helped. It took Bryan and my mom a lot of coercing to get me up and around. Once the Ibuprofen and Skelaxin kicked in, I felt much better, but only for about 3 hours.
The visiting nurse came today to see me at about 8:30 and stayed until about 10:30. She is a very nice lady. I told her that the doctors had me on 800mg of Ibuprofen every 8 hours, then switched me to 600mg every 6 hours, but by 3 or 4 hours, I was in pain. She told me this won’t last long so it would be ok to do 600mg every 4 hours. So, I did try that today and it did better on my pain, but has not by any means eliminated it. The left side of my neck has been the worst today. I am hoping that the exhaustion will allow me to sleep well tonight. Bryan helped me w/ my shower today. That was quite a feat. I don’t have a shower seat yet, so I sat in the bottom of the tub w/ the shower going on me and to get me out, he had to lift me by my butt because I can’t push on anything or have my arms pulled on. My scar is looking really good w/ 2 exceptions: the very top of it is swollen (which is normal) and the spot where the drain tubes were are still pretty pink and swollen and tender. The nurse is going to call Dr Moon’s office and find out the exact date they want the stitches removed and if I am supposed to go see my Primary Care Physician for a follow up since I don’t see him until October 16th.
Bryan got the jungle of a yard mowed today. He had to go over the back yard 4 times to get it look ok. He was exhausted when he came in. He also got the grocery shopping done. I tried to take a nap today to no avail. Once again, the pain overcame. At least I got the bills paid and the mail read. My mom left this afternoon.
Kai is doing spectacularly! He is pretty much his old self, but just tires a little easier. He walks Spike around the block once a day and didn’t appear out of breath or tired when he got home. Hell, I walked downstairs and then back up and it took me a half an hour to recover. I keep telling myself that every day will get better and Kai keeps telling me that too. He is going to bed at 8pm every night and sleeping until about 8am, but at least he feels good.
Tomorrow, I have to catch up on my soap (Young & Restless) and should really get my work laptop out and clean up the hundreds of emails on it. Kai also goes to see his Primary Care Physician at 10:00 tomorrow. I am so glad that she is so involved in his care. Her nurse called us at the hospital to see how Kai was doing. She does really care and this will also provide her w/ a learning opportunity that she will probably never have w/ anyone else. I will try to post some more photos and videos of my surgery tomorrow. They are pretty good. The gal doing it was pretty funny and happy to do it. She is an anestheologist intern. (I learned some things from these photos that I didn't know, will share that later)
Oh, I didn’t tell you. The pain doctors came back to see me before I left and we were talking. Apparently, you are not supposed to take Cipro (antibiotic) and Zanaflex (muscle relaxer) together because it bottoms out your blood pressure. Guess what I was taking Friday night when my blood pressure got so low? You guessed it: Cipro & Zanaflex. Now, don’t you think that even if the doctor ok’d the 2 to be taken together that the hospital pharmacy should have called the Dr back to tell him that the 2 can’t be mixed? What other kind of mistakes like that have happened and had more serious concequences? I know when I have a prescription filled and I also have a prescription for something else that should not be mixed, the pharmacist either calls me or the Dr to find out if he should fill the new one or not and confirm whether or not I am still taking the first one. Isn’t that the pharmacists job? I have confidence in Dr Moon and Dr Braverman, but when they pass their duties off to residents & interns, it leaves too much room for error and this is just another example of that. I know the residents and interns have to learn somehow and I don’t mind being their guinea pig; however, I expect the attending physician to overlook everything.
Dr Moon came to see me before we left, but we didn’t get to talk all that long. I did ask him if my aortic root was still at 4.4cm when he operated and he paused and said he could not say for sure because he didn’t have all the reports in front of him but as he recalled he thought it was much bigger than that and that I was lucky I had this operation now. I took that to mean that I had been living on borrowed time. It really made me stop and think. As horrible as this has been, I am so lucky to be alive today. Kai too. Everytime I think about it, I just cry and thank God for allowing me to live to see another day. I told Kai about this and he said he really didn’t want to think about it and that I was overthinking it. I think in the back of his mind he realizes how lucky we are, but it is too scary to really harbor any time over. I plan to order a copy of every single report and note and get copies of my echos, xrays, etc. I am going to go threw them w/ a fine tooth comb and see if I can find any answers in there that may help me in the future or help one of my kids. I asked them before I left if they would give me copies of everything and they told me no, I would have to fill out the release form and request them and wait for them to be mailed to me (and of course pay the exorbanent fee that the company charges to do that). That really ticks me off. So, tomorrow I am going to call my Primary Care Physician and ask her if I order all of this and have it sent to her (they will do it for free then) if she will have it all copied and give to me so I won’t have to pay that fee. Hell, give the records to me and I will make copies and give her them back and it wouldn’t cost them a thing.
I know Barnes is a good hospital, but they could learn a whole lot from Children’s Hospital. I did receive a feedback form and I intend to fill it out completely. I am sure I will have to use extra pages.
Right before we left the hospital, I had 2 ladies from “Healing Touch” or “Healing Hands” come do their therapy on me. It is an energy type of therapy. They feed off of each others energy to extract the “bad” stuff out of me like pain. Bryan thought it was all hoaky, but after their treatment, I was able to breathe deeper and with no pain. Granted, it didn’t last long, but it did work. Perhaps w/ more sessions, it would be more beneficial. I had heard of this thru my Marfan support group and had done a little research on it, but couldn’t really find anyone close and wasn’t sure what the cost was. The ladies at the hospital said it was no charge. I wish I had known about it earlier because I would have had them come see me every day. I do believe in that stuff. I had a massage therapist in Crawfordsville that when she would put her hands about 3 inches above your body, you could feel the energy leaping from them. It was kind of freaky, but she worked magic! I wish I could find her again. Last I heard, she moved back to Arizona to do some more training in that kind of therapy. Where ever she is now is lucky to have her.
Ok, I am tired and Linnea needs to get ready for bed, so I gotta go.
Later!
We went to bed around 10pm and didn’t really get to sleep unitl around 1:30 and only slept till 2:30. By 3am, I couldn’t stand it anymore. I had to get up and go to the recliner in the living room. So, Bryan got up and helped me carry all my stuff out there and punch the button on my chair for my leg rest. I think I layed there till about 4:30 then finally got to sleep until about 6:30. So, 3 hours last night.
I had another emotional breakdown after Linnea left for school. Again, I was in so much pain, I just couldn’t do anything. Nothing helped. It took Bryan and my mom a lot of coercing to get me up and around. Once the Ibuprofen and Skelaxin kicked in, I felt much better, but only for about 3 hours.
The visiting nurse came today to see me at about 8:30 and stayed until about 10:30. She is a very nice lady. I told her that the doctors had me on 800mg of Ibuprofen every 8 hours, then switched me to 600mg every 6 hours, but by 3 or 4 hours, I was in pain. She told me this won’t last long so it would be ok to do 600mg every 4 hours. So, I did try that today and it did better on my pain, but has not by any means eliminated it. The left side of my neck has been the worst today. I am hoping that the exhaustion will allow me to sleep well tonight. Bryan helped me w/ my shower today. That was quite a feat. I don’t have a shower seat yet, so I sat in the bottom of the tub w/ the shower going on me and to get me out, he had to lift me by my butt because I can’t push on anything or have my arms pulled on. My scar is looking really good w/ 2 exceptions: the very top of it is swollen (which is normal) and the spot where the drain tubes were are still pretty pink and swollen and tender. The nurse is going to call Dr Moon’s office and find out the exact date they want the stitches removed and if I am supposed to go see my Primary Care Physician for a follow up since I don’t see him until October 16th.
Bryan got the jungle of a yard mowed today. He had to go over the back yard 4 times to get it look ok. He was exhausted when he came in. He also got the grocery shopping done. I tried to take a nap today to no avail. Once again, the pain overcame. At least I got the bills paid and the mail read. My mom left this afternoon.
Kai is doing spectacularly! He is pretty much his old self, but just tires a little easier. He walks Spike around the block once a day and didn’t appear out of breath or tired when he got home. Hell, I walked downstairs and then back up and it took me a half an hour to recover. I keep telling myself that every day will get better and Kai keeps telling me that too. He is going to bed at 8pm every night and sleeping until about 8am, but at least he feels good.
Tomorrow, I have to catch up on my soap (Young & Restless) and should really get my work laptop out and clean up the hundreds of emails on it. Kai also goes to see his Primary Care Physician at 10:00 tomorrow. I am so glad that she is so involved in his care. Her nurse called us at the hospital to see how Kai was doing. She does really care and this will also provide her w/ a learning opportunity that she will probably never have w/ anyone else. I will try to post some more photos and videos of my surgery tomorrow. They are pretty good. The gal doing it was pretty funny and happy to do it. She is an anestheologist intern. (I learned some things from these photos that I didn't know, will share that later)
Oh, I didn’t tell you. The pain doctors came back to see me before I left and we were talking. Apparently, you are not supposed to take Cipro (antibiotic) and Zanaflex (muscle relaxer) together because it bottoms out your blood pressure. Guess what I was taking Friday night when my blood pressure got so low? You guessed it: Cipro & Zanaflex. Now, don’t you think that even if the doctor ok’d the 2 to be taken together that the hospital pharmacy should have called the Dr back to tell him that the 2 can’t be mixed? What other kind of mistakes like that have happened and had more serious concequences? I know when I have a prescription filled and I also have a prescription for something else that should not be mixed, the pharmacist either calls me or the Dr to find out if he should fill the new one or not and confirm whether or not I am still taking the first one. Isn’t that the pharmacists job? I have confidence in Dr Moon and Dr Braverman, but when they pass their duties off to residents & interns, it leaves too much room for error and this is just another example of that. I know the residents and interns have to learn somehow and I don’t mind being their guinea pig; however, I expect the attending physician to overlook everything.
Dr Moon came to see me before we left, but we didn’t get to talk all that long. I did ask him if my aortic root was still at 4.4cm when he operated and he paused and said he could not say for sure because he didn’t have all the reports in front of him but as he recalled he thought it was much bigger than that and that I was lucky I had this operation now. I took that to mean that I had been living on borrowed time. It really made me stop and think. As horrible as this has been, I am so lucky to be alive today. Kai too. Everytime I think about it, I just cry and thank God for allowing me to live to see another day. I told Kai about this and he said he really didn’t want to think about it and that I was overthinking it. I think in the back of his mind he realizes how lucky we are, but it is too scary to really harbor any time over. I plan to order a copy of every single report and note and get copies of my echos, xrays, etc. I am going to go threw them w/ a fine tooth comb and see if I can find any answers in there that may help me in the future or help one of my kids. I asked them before I left if they would give me copies of everything and they told me no, I would have to fill out the release form and request them and wait for them to be mailed to me (and of course pay the exorbanent fee that the company charges to do that). That really ticks me off. So, tomorrow I am going to call my Primary Care Physician and ask her if I order all of this and have it sent to her (they will do it for free then) if she will have it all copied and give to me so I won’t have to pay that fee. Hell, give the records to me and I will make copies and give her them back and it wouldn’t cost them a thing.
I know Barnes is a good hospital, but they could learn a whole lot from Children’s Hospital. I did receive a feedback form and I intend to fill it out completely. I am sure I will have to use extra pages.
Right before we left the hospital, I had 2 ladies from “Healing Touch” or “Healing Hands” come do their therapy on me. It is an energy type of therapy. They feed off of each others energy to extract the “bad” stuff out of me like pain. Bryan thought it was all hoaky, but after their treatment, I was able to breathe deeper and with no pain. Granted, it didn’t last long, but it did work. Perhaps w/ more sessions, it would be more beneficial. I had heard of this thru my Marfan support group and had done a little research on it, but couldn’t really find anyone close and wasn’t sure what the cost was. The ladies at the hospital said it was no charge. I wish I had known about it earlier because I would have had them come see me every day. I do believe in that stuff. I had a massage therapist in Crawfordsville that when she would put her hands about 3 inches above your body, you could feel the energy leaping from them. It was kind of freaky, but she worked magic! I wish I could find her again. Last I heard, she moved back to Arizona to do some more training in that kind of therapy. Where ever she is now is lucky to have her.
Ok, I am tired and Linnea needs to get ready for bed, so I gotta go.
Later!
Sunday, September 14, 2008
It was a rough Friday night, but 100% better now.
Sorry I didn’t blog on Saturday, but Friday night ended up being a nightmare, but started off good. I got my Zanaflex and had about 3 ½ hrs sleep when they came in at 3am and woke me up to do my vitals and draw more blood (yes, more needle sticks). Well, the machine couldn't find my blood pressure after 6 or so attempts, so they did it manually. Now, keep in mind, I was flat, not elevated and laying on my right side. The first time it was done manually it was 80/40 which is VERY low, then she had someone else come do it and it was 70/40. I felt fine. By this time, I had no veins left. Several people tried and I was crying so they finally gave up and had the day shift do it. She got it in the first try, but not without me crying. They finally got the blood drawn and sent off. The next thing I know is they have a whole bunch of people in here and they pushed in 2 bags of fluids into me as fast as it could go. My blood pressure came up just a little bit, but I don’t really remember, something like 102/50. Then they had xray come up and take a chest xray to see if maybe I was bleeding internally or something. The xray showed I now had some fluid in my lower left lung. When the labs came back turns out I was very low on blood. I had received 2 units in the OR on Tuesday, they told me I needed another one, but they weren’t going to give it to me right then. They gave me more pain meds, I think this time they tried the pill form of Morphine. Guess what? Yep, I started throwing up again. I threw up all day on Saturday. At least this time when I was wretching I couldn’t hear my breastbone crunching. Everytime before I could hear it. I know, gross. But try being the one who it’s happening to!
By the time they started to give me the blood, they told me I needed 2 units, not just one. They started giving me the first unit of blood about noon on Sunday, today, about 4 hours. Then they pumped some Lasix in me (to get rid of all the fluid that they had pumped into me earlier) and I spent the next 2 hrs peeing. By the time I would get back in bed and get settled in, I’d have to pee again. Needless to say, I was completely exhausted by this time and still throwing up too. I was starting to get worried at this point. I honestly felt like this is the beginning of my death. I thought I would have felt better after the first unit. The second one took about 4 hours also. By this time, all the Morphine, Oxycodone and whatever else they had given me for the pain had left my body and they switched me to good ole Ibuprofen, 800 mg. I was a little weary of it because it was in pill form and I still hadn’t been able to keep anything down yet. I think I got that at about 10pm or so. It was about 20-25 minutes later I felt it hit my system. I instantly started getting hot again and woozy and started to wonder if I was going to throw it up too, but instead it worked! It was huge relief to my body. Then about 11pm, I got my Zanaflex again. Again, I could tell exactly when it entered my bloodstream, started getting hot again. I was sitting up in bed trying to sleep and all of a sudden I felt my lower back muscles totally release. My lower back dropped into the bed about 2 inches. It was the greatest feeling in the world. I can honestly say, I don’t think I have ever had a muscle release like that. But I knew if I could diminish the pain, then the muscle relaxer could do its job. That’s just the way I am. They had brought another bed into the room for Bryan and we both slept soundly for about 3 ½ hrs before they came in wanting more blood. I begged them not to stick me again, just use one of the IV’s I aleady had in me, but neither one would give blood, so yet another needle stick. I think by now, I was up to at least 25 counting both of my arms (not counting any other part of my body they stuck and not counting the Insulin and Heparin shots).
I had been able to keep down some yukky vanilla pudding, ice chips and water at about 6 am so I got a regular breakfast about 8:30. I was able to eat a few bites of an omelet, a few spoonfuls of Cream Of Wheat, and a couple of grapes. Things were looking better. I got more Ibuprofen and that helped for about 3 ½ hrs (when I could only get it every 8 hours!), so when the doctors came in to see me, I asked them to reduce the dosage to 600mg, but increase the frequency to every 6 hours and they actually agreed. Since I was feeling better and needed more muscle relaxers, I agreed to try Baclifen. I had heard it was good and several people I know have used it, but I was afraid it would make me sick again. The pain doctor said he didn’t think it would, it wasn’t a pain killer like the other things that had made me sick, just another muscle relaxer and I don’t think I have ever gotten sick from a muscle relaxer.
When the Baclifen kicked in and the Ibuprofen kicked in, I was feeling pretty good. Bryan got me laughing and then I couldn’t stop. Everytime I would look at him, I would start laughing again. The tech came in and asked what the heck was going on and said that I must be feeling much better. (I guess everyone looks better than death warmed over:-) After lunch, Bryan helped me w/ my shower again. Wow! It actually felt good this time and I was able to stand up straight and tall for that brief time. It’s amazing what I can do when I feel good! After we got my hair dried and had my teeth brushed, I had to lay down for a while, again worn out. I wanted to wait until the next Ibuprofen at 2 or 3 before I attempted to sit in a chair or walk out of the room. Everytime I would sit up or stand up, my back muscles would start going into spasms again. I got my meds and Bryan and I walked down the hallway the nurses station. I asked them if they could get me a TENS unit. It would bring relief quicker than any muscle relaxer and had no side effects. I have one at home, it’s just hard to use unless you have someone to put the electrodes on your back and get them in the right spot. The nurse said she would check into it. That was about 3 or so. It’s now 8:30 and the last I had heard was that the Physical Therapy department had them but they were gone now, so they were going to call the on-call person to find out if they could get one. Still no TENS unit. But I am feeling a whole lot better. I have the same night nurse as yesterday and the same day nurse as yesterday and both of them said it was amazing to see the other side of me and how good I was apparently feeling.
BUT, I still can’t go home. I have to have a bowel movement and I haven’t had one since the night before surgery. We are now at 6 days! So, I am trying. I had a laxative this morning and a suppository late this afternoon. I think I am going to have to ask for another suppository. I want out of here tomorrow and I don’t want to drink any prune juice! Yes, I would rather have something stuck up my butt than drink prune juice! When I told my mom that all I needed was to poop then I could come home, she said to just stay in here a few extra days to get better because she was a terrible nurse and I was even a more horrible patient. Hmmmmm, imagine that:-)
My mom went to get Kai today, so he is home now. He sounds like the normal Kai now and says he is feeling pretty good. My mom said he is sitting up pretty straight, not bent over. He says now that he wishes he would have had his breastbone corrected instead of choosing not have it done. I wish he had too, but maybe God just didn’t have that in the cards for him. I told him he needed to check his email because I knew that his language arts teacher had sent him homework and he needed to get started on it instead of playing on the computer all the time. This evening the homebound teacher called and she is meeting w/ his teachers on Wednesday morning and will be at our house 1:15pm everyday for his schooling.
That it enough for now. Pray for Poop!
Later, man!
By the time they started to give me the blood, they told me I needed 2 units, not just one. They started giving me the first unit of blood about noon on Sunday, today, about 4 hours. Then they pumped some Lasix in me (to get rid of all the fluid that they had pumped into me earlier) and I spent the next 2 hrs peeing. By the time I would get back in bed and get settled in, I’d have to pee again. Needless to say, I was completely exhausted by this time and still throwing up too. I was starting to get worried at this point. I honestly felt like this is the beginning of my death. I thought I would have felt better after the first unit. The second one took about 4 hours also. By this time, all the Morphine, Oxycodone and whatever else they had given me for the pain had left my body and they switched me to good ole Ibuprofen, 800 mg. I was a little weary of it because it was in pill form and I still hadn’t been able to keep anything down yet. I think I got that at about 10pm or so. It was about 20-25 minutes later I felt it hit my system. I instantly started getting hot again and woozy and started to wonder if I was going to throw it up too, but instead it worked! It was huge relief to my body. Then about 11pm, I got my Zanaflex again. Again, I could tell exactly when it entered my bloodstream, started getting hot again. I was sitting up in bed trying to sleep and all of a sudden I felt my lower back muscles totally release. My lower back dropped into the bed about 2 inches. It was the greatest feeling in the world. I can honestly say, I don’t think I have ever had a muscle release like that. But I knew if I could diminish the pain, then the muscle relaxer could do its job. That’s just the way I am. They had brought another bed into the room for Bryan and we both slept soundly for about 3 ½ hrs before they came in wanting more blood. I begged them not to stick me again, just use one of the IV’s I aleady had in me, but neither one would give blood, so yet another needle stick. I think by now, I was up to at least 25 counting both of my arms (not counting any other part of my body they stuck and not counting the Insulin and Heparin shots).
I had been able to keep down some yukky vanilla pudding, ice chips and water at about 6 am so I got a regular breakfast about 8:30. I was able to eat a few bites of an omelet, a few spoonfuls of Cream Of Wheat, and a couple of grapes. Things were looking better. I got more Ibuprofen and that helped for about 3 ½ hrs (when I could only get it every 8 hours!), so when the doctors came in to see me, I asked them to reduce the dosage to 600mg, but increase the frequency to every 6 hours and they actually agreed. Since I was feeling better and needed more muscle relaxers, I agreed to try Baclifen. I had heard it was good and several people I know have used it, but I was afraid it would make me sick again. The pain doctor said he didn’t think it would, it wasn’t a pain killer like the other things that had made me sick, just another muscle relaxer and I don’t think I have ever gotten sick from a muscle relaxer.
When the Baclifen kicked in and the Ibuprofen kicked in, I was feeling pretty good. Bryan got me laughing and then I couldn’t stop. Everytime I would look at him, I would start laughing again. The tech came in and asked what the heck was going on and said that I must be feeling much better. (I guess everyone looks better than death warmed over:-) After lunch, Bryan helped me w/ my shower again. Wow! It actually felt good this time and I was able to stand up straight and tall for that brief time. It’s amazing what I can do when I feel good! After we got my hair dried and had my teeth brushed, I had to lay down for a while, again worn out. I wanted to wait until the next Ibuprofen at 2 or 3 before I attempted to sit in a chair or walk out of the room. Everytime I would sit up or stand up, my back muscles would start going into spasms again. I got my meds and Bryan and I walked down the hallway the nurses station. I asked them if they could get me a TENS unit. It would bring relief quicker than any muscle relaxer and had no side effects. I have one at home, it’s just hard to use unless you have someone to put the electrodes on your back and get them in the right spot. The nurse said she would check into it. That was about 3 or so. It’s now 8:30 and the last I had heard was that the Physical Therapy department had them but they were gone now, so they were going to call the on-call person to find out if they could get one. Still no TENS unit. But I am feeling a whole lot better. I have the same night nurse as yesterday and the same day nurse as yesterday and both of them said it was amazing to see the other side of me and how good I was apparently feeling.
BUT, I still can’t go home. I have to have a bowel movement and I haven’t had one since the night before surgery. We are now at 6 days! So, I am trying. I had a laxative this morning and a suppository late this afternoon. I think I am going to have to ask for another suppository. I want out of here tomorrow and I don’t want to drink any prune juice! Yes, I would rather have something stuck up my butt than drink prune juice! When I told my mom that all I needed was to poop then I could come home, she said to just stay in here a few extra days to get better because she was a terrible nurse and I was even a more horrible patient. Hmmmmm, imagine that:-)
My mom went to get Kai today, so he is home now. He sounds like the normal Kai now and says he is feeling pretty good. My mom said he is sitting up pretty straight, not bent over. He says now that he wishes he would have had his breastbone corrected instead of choosing not have it done. I wish he had too, but maybe God just didn’t have that in the cards for him. I told him he needed to check his email because I knew that his language arts teacher had sent him homework and he needed to get started on it instead of playing on the computer all the time. This evening the homebound teacher called and she is meeting w/ his teachers on Wednesday morning and will be at our house 1:15pm everyday for his schooling.
That it enough for now. Pray for Poop!
Later, man!
Friday, September 12, 2008
Towards the end of the day, much better
Ok, today’s start was not the best. During the night, they had to find another IV site and apparently my veins don’t like the torture either because they keep hiding. Not sure how many times it took to get it in. As of now, I think I have counted a minimum of 15 different needle sticks in just my arms. My right arms is bruised from my wrist half way up to my elbow from the anestheologist trying to get the arterial line in. The top of my right hand was starting to worry me, it was getting really red and it was moving up my arm, so they finally took that one out.
As Bryan walked in this morning, he said, “Well, this day hasn’t been too good yet.” Then proceeds to tell me that someone has hit our van and took off. He is assuming it happened in the parking garage here. Of course they didn’t leave a note, so we will have to eat the $500 deductible for that one too. He says there is just a gouge in the paint from the back wheel to the bumper. Man, we just can not get ahead.
Yesterday, I got my drain tubes out. Yeah, they weren’t gentle about that either. I had two of them right under the vertical inscission. Each one is about the size of a small garden hose. After they pulled them out, then they had to tighten up the stitches that were holding them in place and close up the holes they left. OMG!!!!!! They had already either taken out the wires for my pacemaker or disconnected them. I don’t have a pacemaker but apparently, they put them in in case I would have needed one and they could have just hooked up those wires to an external one.
Oh, I forgot to tell you, I started running a fever and found out I have urinary tract infection on top of all of this!
I have the bandage off of my chest. I am not sure what day that happened. I was thinking maybe yesterday, but Bryan thinks it was Wednesday. They got me up and walking today. Man, my heart pumps so hard now. Not anything like before the surgery. If I have ever talked to you about Kai’s heart, the one thing I was always concerned about w/ him was the fact that his heart pounds so hard, you can see it thru his clothes. Yeah, well, mine does that now too. I am hoping w/ time and proper adjustment of my medications, it will calm down a litte. I think that is contributing to my tiredness.
Right after Bryan got here this morning, someone came to wisk me away again. I was starving. I had been looking forward to having breakfast for the last 2 hours and now they wanted to delay it longer. ARGH! Thank God Bryan was here though, he told them they had to go very slow because he didn’t want me getting sick again from the wheelchair race the day before. The guy said he was taking me to x-ray again. I asked him why, I had one the day before. Turns out we weren’t going to x-ray, we were going to the cardiac diagnostic lab for an echo. By the time we had gotten there, my heart was hurting again. I had been sitting there for at 30 minutes by the time they actually took me back to do the echo. I was in sooooooooooo much pain. They said they had already called my nurse for some more pain meds, but I was sure they wouldn’t bring any down, because I had just had some 2 hours earlier. Just as I got on the table, she showed up w/ some Toradol (which usually does the trick), but by this time I was crying. I seem to do a lot of that lately. Just thinking about crying makes me cry. Anyway, I had these pains during the night and they did an EKG and said something about an “abnormal T” something. So, I guess this echo was to check things again post op to make sure everything was still ok. The tech who did it said “Well, the good news is that your aorta looks great” I asked her if there was anything there that would make my heart hurt like it had been doing and she said she didn’t see anything.
They got me up for a short walk this morning after the trip for the echo. All I really wanted to do was sleep. I was worn out and tired of being pushed around, but I took the little walk. I told my nurse after that, I was going to take a nap and I did not want anyone coming in for anything. I just needed a little nap. I had just got done eating my lunch (YUK!). They had already told me that I needed to go for a longer walk and go up some stairs. And I needed to take a shower today. I didn’t know how I was going to muster up that much energy, but hopefully the nap would help. I tried to lay on my left side, uh, yeah, no go. That was just way too painful. So I turned to my right side and was able to rest for about an hour. They keep wanting to put me in a chair, but it kills by back and neck and I just can’t sit there that long. I need to lay down. They don’t understand that and I don’t know why. I have had nothing but problems w/ my back and neck since I woke up in ICU. You’d think they could recall that much. Anyway, after my nap, I got more meds and got up and took a longer walk and did the stairs, then Bryan helped me take a shower. That was quite the ordeal. It is very difficult to raise my arms above my head. Although Bryan colors my hair great, he can’t dry it and make it look presentable. But, I tell you, I sure am lucky to have him. He is awfully good to me. He has taken very good care of me. And he watches out for me.
I’ve had enough for today. I get to take my Zanaflex tonight, so hopefully I will be able to sleep good for at least 3 hours. I’m worn out. I’ve only had the one hour rest/nap today. I would like to get out tomorrow, but the day nurse said she didn’t think that was going to happen unless they can control my pain. So, if not tomorrow, then I should be able to go home on Sunday. Kai wants to come home on Sunday too.
Later for now! Ciao!
As Bryan walked in this morning, he said, “Well, this day hasn’t been too good yet.” Then proceeds to tell me that someone has hit our van and took off. He is assuming it happened in the parking garage here. Of course they didn’t leave a note, so we will have to eat the $500 deductible for that one too. He says there is just a gouge in the paint from the back wheel to the bumper. Man, we just can not get ahead.
Yesterday, I got my drain tubes out. Yeah, they weren’t gentle about that either. I had two of them right under the vertical inscission. Each one is about the size of a small garden hose. After they pulled them out, then they had to tighten up the stitches that were holding them in place and close up the holes they left. OMG!!!!!! They had already either taken out the wires for my pacemaker or disconnected them. I don’t have a pacemaker but apparently, they put them in in case I would have needed one and they could have just hooked up those wires to an external one.
Oh, I forgot to tell you, I started running a fever and found out I have urinary tract infection on top of all of this!
I have the bandage off of my chest. I am not sure what day that happened. I was thinking maybe yesterday, but Bryan thinks it was Wednesday. They got me up and walking today. Man, my heart pumps so hard now. Not anything like before the surgery. If I have ever talked to you about Kai’s heart, the one thing I was always concerned about w/ him was the fact that his heart pounds so hard, you can see it thru his clothes. Yeah, well, mine does that now too. I am hoping w/ time and proper adjustment of my medications, it will calm down a litte. I think that is contributing to my tiredness.
Right after Bryan got here this morning, someone came to wisk me away again. I was starving. I had been looking forward to having breakfast for the last 2 hours and now they wanted to delay it longer. ARGH! Thank God Bryan was here though, he told them they had to go very slow because he didn’t want me getting sick again from the wheelchair race the day before. The guy said he was taking me to x-ray again. I asked him why, I had one the day before. Turns out we weren’t going to x-ray, we were going to the cardiac diagnostic lab for an echo. By the time we had gotten there, my heart was hurting again. I had been sitting there for at 30 minutes by the time they actually took me back to do the echo. I was in sooooooooooo much pain. They said they had already called my nurse for some more pain meds, but I was sure they wouldn’t bring any down, because I had just had some 2 hours earlier. Just as I got on the table, she showed up w/ some Toradol (which usually does the trick), but by this time I was crying. I seem to do a lot of that lately. Just thinking about crying makes me cry. Anyway, I had these pains during the night and they did an EKG and said something about an “abnormal T” something. So, I guess this echo was to check things again post op to make sure everything was still ok. The tech who did it said “Well, the good news is that your aorta looks great” I asked her if there was anything there that would make my heart hurt like it had been doing and she said she didn’t see anything.
They got me up for a short walk this morning after the trip for the echo. All I really wanted to do was sleep. I was worn out and tired of being pushed around, but I took the little walk. I told my nurse after that, I was going to take a nap and I did not want anyone coming in for anything. I just needed a little nap. I had just got done eating my lunch (YUK!). They had already told me that I needed to go for a longer walk and go up some stairs. And I needed to take a shower today. I didn’t know how I was going to muster up that much energy, but hopefully the nap would help. I tried to lay on my left side, uh, yeah, no go. That was just way too painful. So I turned to my right side and was able to rest for about an hour. They keep wanting to put me in a chair, but it kills by back and neck and I just can’t sit there that long. I need to lay down. They don’t understand that and I don’t know why. I have had nothing but problems w/ my back and neck since I woke up in ICU. You’d think they could recall that much. Anyway, after my nap, I got more meds and got up and took a longer walk and did the stairs, then Bryan helped me take a shower. That was quite the ordeal. It is very difficult to raise my arms above my head. Although Bryan colors my hair great, he can’t dry it and make it look presentable. But, I tell you, I sure am lucky to have him. He is awfully good to me. He has taken very good care of me. And he watches out for me.
I’ve had enough for today. I get to take my Zanaflex tonight, so hopefully I will be able to sleep good for at least 3 hours. I’m worn out. I’ve only had the one hour rest/nap today. I would like to get out tomorrow, but the day nurse said she didn’t think that was going to happen unless they can control my pain. So, if not tomorrow, then I should be able to go home on Sunday. Kai wants to come home on Sunday too.
Later for now! Ciao!
Thursday, September 11, 2008
More of the same
Everyday just a little better. Or at least that is what I keep telling myself. I’m not sure if I really believe it or not. Highlights for Thursday: 1) More torture by the staff. 2) They are finally adding back some of the medications I normally take. The person who came to take me to my chest x-ray must have thought he was at the wheelchair olympics or something. He was whipping me around everywhere. By the time I got there, I had just about sweat clear thru my beautiful hospital gown. I really was not feeling well. I know I looked terrible. I needed my hair washed. Some ladies in the radiology saw Bryan trying to fan me to cool me off, so they made him a little fan like we used to do when we were in school. You know, fold it up accordian style and then tape one end or it. It worked. I don’t remember the ride back, but I am sure it probably wasn’t much better than the ride down.
I did forget to tell you that in the ICU and on Wednesday and Thursday, they had to give me insulin because my blood sugar got too high. They said it happens a lot after surgery. They also had to give me some shots of Heperin to keep me from getting blood clots.
Bryan says he can’t see where I am having the PVC’s (premature ventricular contractions) anymore, but I can feel them. It feels like my heart stops, then jump starts itself. They are telling me it really is that that the heart fills up w/ too much blood, so then it has to catch up on getting the blood out of the heart so it has to beat double. My heartrate is staying in the 90’s which is pretty high, but they say it’s good for now. If I don’t take my meds, my heart rate is in the 80’s. Kai’s heartrate was staying in the high 90’s too. But since they have started giving me my Toporol in the evenings, at least helps w/ the blood pressure and heart rate to a degree.
I can’t remember if I told you or not, but by the time I got out of my surgery, Kai had been discharged. So, his surgery was on Friday, discharged on Tuesday. Five days total stay including the day of surgery for him. He had the TV on all the time, I haven’t turned it on since I got here. I kind of enjoy the quietness (with the exception of the flushing toilets, the squeeking wheels on carts, the hacking and coughing from other patients, and of course the staff having a ball doing their jobs, amongst various other hospital sounds.)
Maybe Bryan did stay w/ me Wednesday night, because I am writing this on Friday and I know he was not here last night. My days are all messed up along w/ my memory. It is really hard to remember anything. I can’t remember if there was anything really significant or not on Thursday. I have talked to Kai and Linnea everyday I think. Linnea cries everytime she talks to us because she misses us. Kai wants to come home to recouperate. Not for sure if it is really so much to do w/ being w/ us or just wanting to get back to his computer games. He needs to get going on his homework (although, now that I think about it, I don’t think I have received any by email yet. But then again, I am not sure if I have even checked my email since Tuesday.
Well, that’s it for Thursday.
I did forget to tell you that in the ICU and on Wednesday and Thursday, they had to give me insulin because my blood sugar got too high. They said it happens a lot after surgery. They also had to give me some shots of Heperin to keep me from getting blood clots.
Bryan says he can’t see where I am having the PVC’s (premature ventricular contractions) anymore, but I can feel them. It feels like my heart stops, then jump starts itself. They are telling me it really is that that the heart fills up w/ too much blood, so then it has to catch up on getting the blood out of the heart so it has to beat double. My heartrate is staying in the 90’s which is pretty high, but they say it’s good for now. If I don’t take my meds, my heart rate is in the 80’s. Kai’s heartrate was staying in the high 90’s too. But since they have started giving me my Toporol in the evenings, at least helps w/ the blood pressure and heart rate to a degree.
I can’t remember if I told you or not, but by the time I got out of my surgery, Kai had been discharged. So, his surgery was on Friday, discharged on Tuesday. Five days total stay including the day of surgery for him. He had the TV on all the time, I haven’t turned it on since I got here. I kind of enjoy the quietness (with the exception of the flushing toilets, the squeeking wheels on carts, the hacking and coughing from other patients, and of course the staff having a ball doing their jobs, amongst various other hospital sounds.)
Maybe Bryan did stay w/ me Wednesday night, because I am writing this on Friday and I know he was not here last night. My days are all messed up along w/ my memory. It is really hard to remember anything. I can’t remember if there was anything really significant or not on Thursday. I have talked to Kai and Linnea everyday I think. Linnea cries everytime she talks to us because she misses us. Kai wants to come home to recouperate. Not for sure if it is really so much to do w/ being w/ us or just wanting to get back to his computer games. He needs to get going on his homework (although, now that I think about it, I don’t think I have received any by email yet. But then again, I am not sure if I have even checked my email since Tuesday.
Well, that’s it for Thursday.
Wednesday, September 10, 2008
One Day at a Time
Sorry I haven’t posted for a while. Bryan was getting frustrated w/ this website kicking him off and it was just easier to do it myself. Ok, so I think I left off on still in the ICU on Wednesday morning. They came in and starting throwing me around pretty earlty and Bryan wasn’t there yet. I don’t really even remember the trip from ICU to my regular room. I do remember the nurse Christy in ICU was not nice at all. I understand that they have to put pressure on my groin to make the femoral artery stop bleeding (yes, I had to have another one), but you don’t have to put all your body weight on it. I bruise so easily anyway, it’s going to look like a Mac Truck has hit me. Before surgery, I already had bruises on my arms just from the blood pressure cuffing getting so tight.
I can’t remember what time Bryan came on Wednesday or what time I got back to my regular room. Luckily, it was the same room as the one I was in the night before surgery. They actually gave me a private room. I think I would have gone bullistic if I would have had to have stayed in the same room w/ someone else and I am sure that person would have gone crazy having me for a roommate. When I am in pain I moan on every exhale. Can’t help it, just do it automatically. And I can go from freezing cold to sweating bullets in minutes.
I know they were giving me Oxycodone which is what they were giving Kai and some Fenergen for the nausea that it causes me. I was ok w/ the 50 mg dose, but when they upped it 100 mg, I ended up throwing that up. Then they switch to Morphine. All it really did was make me tired, which was ok w/ me. I would have been happy just sleeping for the next 24 hours, but OH NO! Can’t let the patients sleep. I think that is the first thing they must teach the healthcare professionals when they are hired. So, needless to say, the pain has not been kept under control in my case.
My mom & Jim went home after my surgery when they told them they were going to keep me sedated. Bryan was exhausted, so he didn’t stay w/ me on Wednesday night. I didn’t get much sleep. Between them waking me up to do things and my bad sleeping anyway, it was pretty much hopeless. I was not able to take my muscle relaxers to help me sleep either. And my muscles are killing me. I have noticed that when I am dreaming it feels like someone is standing over me waving their arms like to freak me out or something. I have startling wake ups.
The anestheologist nurse took some pretty cool pictures and videos of my surgery, so I will try to get those up if you are interested in seeing them.
I think that’s it for Wednesday
I can’t remember what time Bryan came on Wednesday or what time I got back to my regular room. Luckily, it was the same room as the one I was in the night before surgery. They actually gave me a private room. I think I would have gone bullistic if I would have had to have stayed in the same room w/ someone else and I am sure that person would have gone crazy having me for a roommate. When I am in pain I moan on every exhale. Can’t help it, just do it automatically. And I can go from freezing cold to sweating bullets in minutes.
I know they were giving me Oxycodone which is what they were giving Kai and some Fenergen for the nausea that it causes me. I was ok w/ the 50 mg dose, but when they upped it 100 mg, I ended up throwing that up. Then they switch to Morphine. All it really did was make me tired, which was ok w/ me. I would have been happy just sleeping for the next 24 hours, but OH NO! Can’t let the patients sleep. I think that is the first thing they must teach the healthcare professionals when they are hired. So, needless to say, the pain has not been kept under control in my case.
My mom & Jim went home after my surgery when they told them they were going to keep me sedated. Bryan was exhausted, so he didn’t stay w/ me on Wednesday night. I didn’t get much sleep. Between them waking me up to do things and my bad sleeping anyway, it was pretty much hopeless. I was not able to take my muscle relaxers to help me sleep either. And my muscles are killing me. I have noticed that when I am dreaming it feels like someone is standing over me waving their arms like to freak me out or something. I have startling wake ups.
The anestheologist nurse took some pretty cool pictures and videos of my surgery, so I will try to get those up if you are interested in seeing them.
I think that’s it for Wednesday
Doing better now
Ok, it's Jalee again. Yeah, I was pretty ticked off yesterday in the ICU. It's like they didn't care whether or not they were hurting me or not. The first nurse I got, Joe (and yes he was eye-candy:-) was really pretty good. Since I have so many problems w/ my back and neck, I was more afraid of the pain from that than I was of the pain from my chest. Sure enough, when they took out the breathing tube, I was in excruiating pain in my neck. I felt like a 3 day old baby again. I couldn't control even one muscle in my neck. The knots in the right side of my back and neck were back w/ a vengence and they duplicated themselves on the left side as well. Joe got me some ice packs and put behind my back and neck and worked on my knots for probably a half an hour. He knew I had been receiving trigger point injections back home and knew how to massage them to get them to release. He was the best.
I think I threw up in the ICU at least once. Joe's shift was over and in came Herman who acted like it was more of a bother to take care of his patients. I will say one thing for him though. He was a good ice chip feeder:-) Of course every time I had to throw up, I couldn't control my neck muscles and that made it even more difficult.
I kept asking them to call Bryan and they said they would, but they didn't. I really needed him there. He would have known how to take care of me and it would have freed them up to take care of someone else. That night, was the most unpleasant night. Wednesday morning rolled around and they started torturing me again. I don't really remember what exactly it was that they were doing, but they didn't want to do anything at a slow pace or at my pace, they had their own agenda and no one was going to get them off that course.
I think I threw up in the ICU at least once. Joe's shift was over and in came Herman who acted like it was more of a bother to take care of his patients. I will say one thing for him though. He was a good ice chip feeder:-) Of course every time I had to throw up, I couldn't control my neck muscles and that made it even more difficult.
I kept asking them to call Bryan and they said they would, but they didn't. I really needed him there. He would have known how to take care of me and it would have freed them up to take care of someone else. That night, was the most unpleasant night. Wednesday morning rolled around and they started torturing me again. I don't really remember what exactly it was that they were doing, but they didn't want to do anything at a slow pace or at my pace, they had their own agenda and no one was going to get them off that course.
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