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?
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