Jalee & Kai's Journey

Had our follow up and Linnea's DNA test results are back.

2008-10-18T22:44:00.001-05:00

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!!!!

Yes, I am still blogging :-)

2008-10-07T19:44:00.000-05:00

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!

I have to remind myself, I am only 3 weeks past my surgery!

2008-10-02T14:25:00.000-05:00

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?

The last few days.......

2008-09-26T15:48:00.000-05:00

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!

Staying the Course.

2008-09-22T21:04:00.000-05:00

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.

Ups & Downs, but more Ups than Downs, I think

2008-09-21T19:54:00.002-05:00

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!

Today was a good one!

2008-09-17T21:03:00.001-05:00

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!

We are home now.

2008-09-16T20:18:00.001-05:00

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!

It was a rough Friday night, but 100% better now.

2008-09-14T20:47:00.002-05:00

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!

Towards the end of the day, much better

2008-09-12T22:12:00.000-05:00

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!

More of the same

2008-09-11T19:32:00.000-05:00

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.

One Day at a Time

2008-09-10T19:06:00.000-05:00

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

Doing better now

2008-09-10T11:41:00.000-05:00

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.

Life is full of surprizes.

2008-09-10T09:57:00.000-05:00

After the long torturous wait yesterday, we were told that Jalee would be kept sleeping all night. With this news and the fact that Kai went home around 4:00pm, we decided that it was best for us to leave as well. I had gotten enough time to eat a bit and download her pictures when I received a call from the attending Dr. about the decision to remove the breathing tube and wake her. Oh yes, this was after they had already removed the breathing tube. Jalee was all alone for the rest of the night.

The anger was flowing like a river when I arrived this morning. The ICU personnel had no concern for her at all. Her arterial line had come out of her wrist and she was bleeding out. The Dr's have decided to give her Percacet even though it is on her wristband indicating that she has an allergy to it. They plan to offset her reaction to it with Phengren. We will see how things go.

Shortly after I stepped into the ICU this morning Jalee was prepared and sent to a private room. She has started to eat and is resting well.

We are in for a rough night.

2008-09-09T20:00:00.003-05:00

The surgery went fine, but the recovery is taking longer than expected. Jalee is in the ICU with all the equipment still inplace and a warming blanket to help raise her interior body temp. She will be sedated through the night to allow them to bring her back to a normal state and do it in a way that is comfortable for her. She needs the rest anyway. Dr. Moon stopped by on his way out to check on her one last time. He reassured us that everything was fine. Sometimes Jalee can be a little difficult to deal with. She is just staying in character.:-)

Wednesday morning will entail the removal of the breathing tube, removing some of the large IV's, and putting smaller lines in for the stepdown room. It will be another day of rest filled with alarms and endless visits from the nurse.

One day at a time.

All is well.

2008-09-09T16:32:00.004-05:00

Our first call came at 11:40 to tell us that they had made her incision. The clock has started. We recieved a phone call two hours later to inform us that surgery was progressing well and no complications. Our four hour call ran a half hour late, so I checked with the lady at the desk. She was told that Jalee was doing great and Dr. Moon was on his way up to see us. 4:10 Dr. Moon informed us that everything went very good. We will be able to see her after 5:30. There has been a lot of happy news in this waiting room today. Must be a sign of the quality of the staff they have here.

Note: We have heard that Kai went home with his dad around 4:00. He was able to pass all the requirments to be released.

Off to a bumpy start.

2008-09-09T11:03:00.003-05:00

They came to take Jalee to prep for surgery at 5:00am this morning. The IV that was put in yesterday was to small for surgery so they put in a new one. Ouch, that had to hurt! The attempt to put in a arterial monitoring line in the left wrist didn't go so well. After two tries and some crying, it was decided to wait until she was in the OR. Then the news that she had been bumped. An emergency surgery on another patient delayed her by about two hours. We are praying that all goes well from here. She is estimated to be out around 3:30 and ready for visitors by 4:30 - 5:00.

Keep your fingers crossed.

Kai is doing great & I have been admitted

2008-09-08T17:32:00.002-05:00

I checked on Kai this morning before my heart catheterization and he is doing great. He was eating better this morning, faster than I have seen him eat so far. The doctors said they were thinking about discharging him tomorrow morning. I don't think he is ready for that. I told the nurse that I wanted Kai to be able to come over and see me tomorrow before my surgery and I would like his discharge to wait until after I get thru my surgery. She said since he has a long drive home, they don't like to release him late in the day, so she asked me if Wednesday would be ok. I said that would be even better. So, I hope they will wait until Wednesday. I was only able to be there a little over an hour this morning before I had to head to Barnes.

Everything started about 9:30, but it took a long time to get prepped for it. I am not really sure what time it all took place. Even though they gave me Versaid and Fentinyl with a local anesthestic around my femoral artery, it still hurt like hell. I think they were using a harpoon instead of a catheter. Then after all that, the person who took it out had to apply pressure for 10 minutes to stop the bleeding. When I say pressure, I mean like sitting a car on my right femoral artery. I know, that will be nothing compared to the truck that will be sitting on my chest tomorrow after surgery.

They said I could go over and see Kai tonight, so I will probably put on some sweats and go over there to see him.

My surgery is scheduled for 7:30 tomorrow. The Dr said they would come get me from my room bout 5:30 or 6:00 in the morning. My mom & Jim are already here and are going to stay at Haven House w/ Bryan tonight, so they will have to be here pretty early tomorrow. I'm glad I get to sleep most of the day tomorrow.

I talked to one of the doctors today about photos tomorrow and he said to bring the camera and talk to them tomorrow. I told him that Dr Moon said the anesthesiologist would do it and told him about Kai's anesthesiologist. He knows her and said he likes her too. He said, "well, our people probably won't be that perky." I thought that was pretty funny. The nurses at the Children's Hospital had already warned me that the staff at Barnes weren't nearly as nice as at Children's :-) My male nurse here is pretty funny. He had me figured out in the first 10 minutes. When my mom walked in, he said, "are you her mom?" My mom said, "yes". He said, "Oh, I'm sorry!" He's a hoot. Dr Braverman just stopped in to see me and wish me luck and told me he would be back to see me after the surgery. Dr Moon came to see me right after the cath. There have been several other doctors in and out, but I don't remember who they are or what they are for.

Ok, I am going to finish watching my Young & Restless and go see Kai, then before bed, I am going to watch my other Cheech & Chong "Still Smokin". So, the next blog you will get will be from Bryan. I have showed him how to access it and up date it and if we get photos, I have also showed him how to download them from the camera to the computer and upload to the web.

So, ta ta for now. It will be an early day!

Kai is out of CICU & In a Regular Room Now

2008-09-07T13:32:00.006-05:00

I called the hospital this morning at 9:15am and they had already moved him to regular room, so when I was transferred to the new nurse, she didn't know anything, hadn't even been in the room yet. Kai had just been moved, so I had her transfer me back to the CICU so I could talk to Barbara, his CICU nurse. She said Kai had a rough night. Didn't sleep much. Threw up once. They had given him an Oxycodone last night orally. It has Percacet and Tylenol in it. (I can't take Percacet, makes me sick to my stomache). He didn't really have to much in his stomache. I got him to drink some chicken broth, eat 4 or 5 bites of jello and drink some water.

We got to the hospital about 12:30 today. They have taken out his catheter and his central line. Still has his chest drain tube in. He said the move this morning was pretty tiring. He is sleeping now, gearing up for the Bears game tonight. Kai, his dad, and his grandpa are going to watch it together tonight. He is too long for the beds here. It's ok as long as the bed is flat, but when you elevate the head, the area that it starts to bed is too far toward the bottom and he slides down, then that makes his legs go further down and the soles of his feet are pushing against the footboard of the bed. It is a nice room though. It has a nice size window couch that looks like it would be much more comfortable than a chair to sleep in.

His dad stayed w/ him from about 2:30-10 this morning, then his grandparents came over. He says his pain is staying at a 3 or 4 on a scale of 1-10 when he is awake. I just asked when he is eligible to have some more pain med. And he took another Oxycodone.

I uploaded some photos and the video today. Go up to the top right side of the page under "Links to Other Sites". I have labeled the graphic photos (inside of the body). If you don't want to see anything graphic (then don't look at them.

He's Doing Very Well

2008-09-06T15:21:00.002-05:00

The anesthesiologist, Cathy, came to see Kai last night. By this time, his blood pressure had come up, but he was bleeding more than what he should have been, but they weren't worried yet. Just monitoring.

She asked me if we had watched the video yet. She said one of the "pictures" she took was a video she shot up on the monitor of the doctor working on Kai. She said she was surprised that he came out of the OR w/out the breathing tube, but after she woke him up, he kicked his legs up in the air and pointed to his mouth, so she asked him if he wanted the tube out and he said indicated yes, so she took it out. She is so sweet, so caring. I really like her. We talked for a while, then Kai woke up by throwing up. Luckily, she was on one side and I was on the other side and she was able to roll him over to his right side to avoid getting it all over his central line which goes in just under his left collarbone. He was pretty miserable, but got him all cleaned up and got the bedding changed. With having to roll him over from side to side, it did increase the bleeding a little, so they ended up giving him 2 units of plasma to help the clotting and said that they would check his levels again at midnight and if his numbers have dropped, then they would have to give him some blood.

His color seemed to get better, the grayness was lessening and hints of pink were starting to come back. The nurse got me a reclining chair, but warned me it was broken and I would have to lean it up against something unless I wanted to fall out backward, so I leaned it up against the suitcase in front of the wall. I put my sunglasses on and covered up my head w/ my sweater and tried to take a nap. By this time, I was completely exhausted. My body just felt empty. I felt shaky and it felt like I had a heavy yamika or bowl sitting on my head. My breathing not quite right. I really didn't feel good, so by 10pm when John & his mom came back, I had already told Bryan that I didn't think it would be a good idea for me to stay the night. I was afraid I was just completely wearing myself out and jeopardizing my health and keeping my surgery on schedule. So, I asked John if he would stay w/ Kai as long as he could as I had to get back to Haven House and sleep.

As I was getting ready to leave, Kai woke up and looked really good. His color looked good, his vitals looked good, and he was talking better. I didn't have to lean down to hear him anymore. His voice was coming back. He wasn't in any pain and was completely alert and talking. I felt better then leaving knowing that he was doing so well. I asked the nurse to call me if there was any negative changes.

I slept from about 11pm - 7am. Even though I was still exhausted when I woke up, I couldn't go back to sleep and I still wasn't feeling quite right. Bryan went over to Burger King and got us some breakfast. While he was over there, I called the hospital to check on Kai and the nurse said he had a good night. The bleeding had stopped, no more throwing up, vitals were good, and he didn't have to have any blood. Again, prayers answered! Thanks everyone!

I called my mom to update her. She was going to go to Bloomington today to be w/ Linnea and let Trace go home until Monday. I thought I would feel better after I ate, but I didn't. In fact, the right side of my heart was hurting. This is nothing new. I have these pains all the time, but they usually don't last long. It was hard to breathe again. I decided I would just lay back down until I felt better. Finally about 9:30 or so, I decided I'd better get in the shower. It felt good to have that hot water run over my aching body. By the time I got out, I was feeling better.

We finally got to the hospital about 11:45. Kai was sleeping. John had left about 8am when his parents came over. They said the nurse got him up and into the chair sitting up for while. He did have a little problem w/ his asthma, so they gave him a breathing treatment I think and had the oxygen canula on him. When we got there, they left. Kai woke up and was awake for about an hour or so. He is looking REALLY good. He said they have been doing a good job keepin his pain under control w/ Morphine. I told him Morphine was good thing, but hospital stays are the only time he can ask for it:-) He said it didn't make his head feel funny or anything, just took away the pain. He watches the History Channel and the Military Channel constantly. Happy as a lark with these channels. They are going to bring him in some soft food here in a little bit. He is awake again, so I will write more later.

He's in the CICU now and sleeping

2008-09-05T16:55:00.002-05:00

Kai is in the Cardiac Intensive Care Unit now. As soon as I walked thru the dept door, his room was right in front of me and he saw me. I waived to him and he waived back, then I went to the desk to see if I could see him yet and when I turned back around he was crying. They told us the nurse wasn't ready for us yet and to go back to the waiting room and would come get us when we could see him. Well, we waited for an hour and it was after 3:00 so I figured the shifts had changed and they probably didn't tell the shift coming on that we were waiting, so I went back and asked if I could see him. They said yes. They were giving him back the blood they took from him before the surgery, so he did not need a transfusion. I said Hi to him and he asked for water, but he can't have anything by mouth yet. The nurse offered him a wet washcloth to suck on, but he refused that. He is pretty pale (yes, we can be more pale than we are!)

I asked him about his pain and he said he didn't have any, he was just thirsty and he wanted a blanket that was stuck under him out. He would wake up every so often, but then they upped his pain meds and that has pretty much put him out. His blood pressure was pretty low, so they increased his fluids, but it wasn't coming up much so they ended up giving him a dose of calcium which make the heart pump harder to increase the blood pressure. The top number is now in the 80's which is good, but the bottom number is staying in the 30's/low 40's, but they are not worried about that.

He can be sound asleep but as soon as the nurse goes to pull the cover back around his mid section, boy that hand flies up there to cover himself up. Funny how quickly he can move when his modesty is in jeopardy:-)

My mom & Jim have left to go back home now. They were able to see him, but he was sleeping so he won't know they were in the room.

Dr Sharkey came over and checked on him and said she would be back on Monday to see him as she was off for the weekend, but planned to at least check up on him by computer.

The nurse said w/ the pain med, he will probably sleep most of the time for the first 24 hrs. The is only a small little straight chair in the room, not even one of those that recline, so I am not sure I will be sleeping in the room. My back just can't take it, but I may sleep in one of the reclining chairs in the parent room. I went in there and man, there sure are a lot of sleeping parents.

I was supposed to go have blood drawn today, but didn't make it to the lab in time and they are closed on the weekends, so I guess they won't get it until Monday. The lady who called me said it wasn't a big deal if I couldn't get there today, but it would be nice to get it ahead of time.

That's all I can think of now. My brain & body need some food and sleep desparately.

Ta Ta!

Just looked at the photos

2008-09-05T13:38:00.003-05:00

The nurse brought out my camera. There are a couple shots of his chest open and several of the Dacron tube. She took the ones of the graft on the monitor that the surgeon uses for the detail stitches. I could see the leaflets of the aortic valve and the bypass tube. For my surgery, I am going to ask them to get one of the heart-lung machine as well.

I wasn't sure if I was going to be ready to see the photos, but the curiosity outweighed the nervousness. I'm glad I did. The inscision doesn't look as big as I thought it would be.

Dr Huddleston just came and said everything is good and Kai is on his way to CICU, so we are headed up there.

Almost Done

2008-09-05T12:59:00.003-05:00

The nurse came back and explained that the coronary arteries attach to the aorta in the area that was replaced, so he was putting those back into the graft (the Dacron tube). Now, he is off the heart-lung machine and he is just checking for any leaks/bleeding. The echo was very good. She said if it was going to be more than an hour before they are done, then she would come back out and talk to us. But, Kai is doing good. After they get out of the OR and into ICU, it will be about an hour before we will get to see him. So far, so good. THANK GOD!

Still in surgery

2008-09-05T12:20:00.001-05:00

The nurse came out and said they were doing the 2nd coronary. Not sure what that really means, but she said he is still doing fine. She would come back out about 1:00 for the next update.

They are doing the repair now

2008-09-05T10:33:00.003-05:00

The nurse just came out and said they have started the replacement of the aorta and it doesn't appear that they will have to replace the valve at this point. They will do a transesophogeal echo and check the repair from the inside when they finish. She said he is doing well. I asked if the reason they took so long to get started was trying to get the IV's in and she said they had a little trouble getting them in. That's it for now. More updates in about an hour.

He's in the OR now and have finally started.

2008-09-05T09:12:00.003-05:00

We were here at 6:00. About 7:00 they gave him Versaid, but he said he wasn't feeling any different. About 7:30 they came and got him and took him back to the OR and said it would take about an hour to get all the IV's in and everything. The anesthesiologist took a picture of Kai in the bed and John & I on either side of him in front of the surgical doors. (I can post any photos since she still has my camera. She is going to take photos for us during the surgery) I didn't cry until I turned around away from Kai, so I did better than expected. There were a couple of times I welled up, but was able to ward off the downpour.

They said they would come tell us when that was over and they were getting ready to do the surgery. Well, they just now came and said it took a little longer than expected, but he is doing fine. She didn't elaborate on what took so long. She said the next update would be about 10 or 10:30.

Barnes called me again. I can't eat or drink before my pre-op on Monday, so I did not ask them to move it to the afternoon. I can't go that long without eating unless I want to get sick. I made that mistake this morning. I drank my 2 Dr Peppers and then took my medicine and didn't eat until 8:00. Mistake! I was dizzy and very nauseous. I am finally feeling better and back to normal now (how ever normal I am:-)

I didn't get much sleep last night, only the 4 hours that my muscle relaxer knocked me out for. Once it was worn off (at 3am), I was wide awake. Something on Kai's bed kept clicking at about the same rate as his heart and bugged the crap out of me. So, I have been awake since about 3. I'm sure it will hit me in a couple of hours.

Oh, did you know that you can post comments here? They don't show up until I approve them to post, but you can post comments if you want. Tell me what you think of this blog. Is there something you are not getting from it that you would like to see? Do I sound like a total witch?

Ok, later!

We finally have times

2008-09-04T20:50:00.002-05:00

Well, we came to St Louis today. It rained all the way down here. First, Kai had his Echo done. His aorta is now at 4.8, so that growth spurt in July wasn't just in his height, his aorta grew by .1 cm. Next, he had chest x-rays done and blood drawn. Then we met with the surgeon. This conversation went much better than the one on the phone. He explained to Kai that he thought he would be able to correct his breastbone, but that it would cause more pain than just the open heart surgery. Kai decided he wasn't going to bother having his breastbone done. He didn't want to add to the pain intensity and time to heal. It's his body, so if that is what he wants, then that's ok w/ me, I just think he will regret it later because that is all he has been talking about lately: how much he wants it corrected. Maybe tomorrow he will change his mind.

After we met w/ the surgeon, we met w/ the anesthesiologist, Cathy. Very nice lady! She did say something that I had not heard before. You know you always hear about people who say they heard the doctors/nurses talking during the surgery, well apparently, as they are switching him over to the heart-lung machine, the anesthesia hasn't been thru it yet, so for a short period of time, he may wake up a little and be able to hear what's going on, but as soon as the blood gets back into his body, the anesthesia kicks back in and he'll be out again. She said approximately 40% of adults who are put on the machine experience this. They will give him some Versaid when he gets there to calm him down and said that it really acts like a short term memory eraser. He may not even remember coming to the hospital when he wakes up. Linnea had Versaid before both of her surgeries and was pretty loopy and hilarious, but when she woke up, she knew that she had had surgery. She doesn't remember anything she said or did while waiting in the prep area though.

So, we had to get an antibacterial ointment for Kai. He is to put it in his nose every morning and every night for 5 days to help prevent any germs from sneezing or touching his nose then touching his chest. We were also given one of those Betadine scrub pads that they scrub in for surgery with. He is to take a shower tonight, wash his face w/ his regular stuff, wash his hair w/ his regular shampoo, then scrub the rest of his body with this scrub. They will repeat it in the prep area, then again in surgery and hopefully, this will prevent any infections. He can not eat anything after midnight and nothing in his mouth after 4am.

We have to be at the hospital at 6am, they will take him to the OR at 7:30, then start the surgery about 8:30. Should last about 4-5 hours. The anesthesiologist said when they start to wake him up at the end of surgery, if he is showing signs of being able to breathe on his own and want the breathing tube out, then they will go ahead and take it out, but if he is not fighting it, then they will leave it in until he is conscience enough to want it out.

He is doing remarkably well, but I think he is more trying to ignore it than anything. I think once he is at the hospital and in the gown, it will be a different story. They said they wouldn't start any IV's until he was in the operating room and had already been gassed, that way, he wouldn't be awake to be poked. I, on the other hand, am very jittery. I feel kind of numb and tears have welled up a few times today, but Kai hasn't seen it. I'm afraid tomorrow it will be different for me too. I don't think I am going to be able to hold it back then. My mom & Jim are coming early in the morning to see him before he goes in. I don't know if they are going to stay all night or not. I asked Kai if he wanted me to stay w/ him tomorrow night and he said no. So, I asked him if he wanted anyone to stay w/ him and again, he said no. He said he could take care of himself. I said, "No, you will not be able to do anything for yourself. Everything will have to be done by someone else." So, I will probably stay in CICU w/ him tomorrow night. I'm going to take my stuff w/ me anyway. I just don't think I want to be separated from him on the first night.

Trace (my brother) is staying w/ Linnea and Spike. Linnea said he fixed spaghetti for supper tonight and he helped her w/ her homework. Today was Linnea's picture day at school. We got her hair cut on Tuesday and it really looks nice. She has lost another tooth and the 2 front ones are only about 1/2 way in so this should be an interesting picture:-) Trace got to experience what it was like in our house in the mornings trying to get everyone ready for everything. It was funny watching him sit back and watch the chaos ensue. First Linnea forgot her glasses, so Kai ran them out to her at the bus stop, then she came back. She forget to get another shirt to change into after her pictures (she thought she might get too hot in what she had on), so then I had to run downstairs real quick and get her another shirt and out to her before the bus came. By the time we left the house, I was dripping w/ sweat. I felt like I had just run a marathon. Most of the packing had already been done, but all the toiletries I had to use this morning couldn't be packed until this morning. But if you know me, I have a list for everything and yes, I had a packing list. And I checked things off as I put them in the suitcase. I haven't found anything important that I have forgotten yet.

Trace said Spike either sat on the stairs looking out the door or behind my chair looking out the door waiting for us. When he wasn't doing that, he was curled up in a ball all depressed. Poor Spikey! He missed Bryan so much over Labor Day weekend. He didn't want to leave the stairs then either. He was waiting on Bryan to come home. When we left this morning, he was trying to sneak out the door so he could go too. When he was told no, he couldn't go and had to get back upstairs, he had his tail between his legs, his head down, those big brown puppy eyes staring back so pitifully begging us not leave.

We got about a quarter of the way to Haven House this afternoon when I realized that we never went back to the pharmacy to pick up that ointment, so we had to turn around and go back. By then, it was definitely in the middle of rush hour and it took us about an hour to get to Haven House. This construction is supposed to continue thru 2010, so if you are heading to St Louis, better check the detours before you go.

The anesthesiologist said she would be able to take some pictures for us. Kai said he doesn't really want to see them, but you know me. I love the medical stuff, so I definitely want to see inside Kai and I. I am going to have them take photos during mine as well.

Ok, I'm tired of typing. I have texted many of you. My computer is going w/ me tomorrow and as I said, I will post updates as we get them. So, keep checking back. I probably will not be making any phone calls or texting. You can send e-cards to Kai thru the hospital website: http://www.stlouischildrens.org/Default.aspx?tabid=104 There is a place for a room number, but it is not required and we don't have a room number yet. He will be in CICU until at least Saturday, probably Sunday.

My pre-op is tenatively scheduled for me to be at the hospital at 9:30am on Monday. They just left me a message and I haven't gotten them called back yet. I will do that between 10 & 2 tomorrow. I'm going to see if they can move it to the afternoon so I can spend the morning w/ Kai.

I'm exhausted and have to get my shower taken so I don't have to do that in the morning. We have to leave here about 5:15am. It is going to be a long day. I have my Puffs Plus w/ me and a couple of Cheech & Chong movies to watch on my computer while we wait. That should take my mind off things!

Thank you everyone for all the love, support, and prayers you are sending our way. We need them and they are very much appreciated!

More to come.............. Later!

Do I Look Like a Circus Dog?

2008-08-27T21:24:00.003-05:00

Do I look like a circus dog? No, I didn't think so either, but apparently most everyone in the medical field thinks I do because they make me jump thru hoop after hoop in order to get any accomplished.

Yesterday, I called Blue Cross/Blue Shield (Kai's primary ins thru his dad) to find out 2 things: 1) If they had in fact approved the surgery (since Health Alliance said as long as BC/BS pays on it, then they will pay the remainder and I would not have a co-pay for Kai), and 2) Why they had not yet paid for the nearly $8000 CT scan back in June.

The lady I spoke to there, Marci, was very nice, polite and helpful, but dang, why can't anything be not complicated? She said they had not paid on the CT scan because the hospital had not given them all they had asked for. So, I asked what they needed. She said "medical records". So I asked her to be more specific, was it the diagnosis w/ the CPT & HIPPA codes or what. She repeated she needed "medical records" Well, I don't think they need every piece of his medical record. All they need is the justification for the need for the CT scan and that justification should be no more than the diagnosis , explanation of what Loeys-Dietz is and the recommedation for treatment and follow up. Don't you agree? So, anyway, I said, "well, if you don't have what you need, then let's just conference call the hospital and find out why they aren't providing the necessary information. She agreed, we got ahold of someone at the hospital who transferred us to someone else who told us that she had mailed the docs back on July 30th, but could have faxed it had she been given a fax number. Now, why wouldn't she have been given a fax number? She would have rcvd a written request and I am sure that written request had a fax number on it. This is not 1950 anymore. And how difficult would it have been to call and ask for a fax number anyway? Ok, so she said she would fax it over.

As for the 1st question, Marci tells me that she can see the approval for the 5 day in hospital stay, but couldn't see where they had approval for the surgery itself. Again, hello! If you have a hospital stay planned, do you think it would be for sickness or do you think it would be for a surgery? I just don't understand why people can't use common sense. So, we called Karen, the insurance coordinator for Huddleston's office/hosptial and she said she was given the approval by XXX at BC/BS and had the reference number she was given. So, Marci asks the other gal if she that person that she got the ok from was in Provider Services or Member Services. It was Provide Services. Well, Marci is in Member Services and can't see the Provider Services notes on my son (the dependent of the insrd). How stupid is that? My son should only have one account and everyone who has information regarding him, should be able to enter and read notes regarding him. If the customer service rep in Member Services can't see Provider Services notes/approvals, then how are they servicing the member? I'm not a provider so I shouldn't be pressing "1" for the Provider Service line. I guess the next time I want to know information that Provider Services has, then I will just press "1" and act like I am a provider.

That was just the first phone call yesterday. The 2nd one was to Carle Clinic for a $65 bill I keep getting for Date of Service 10/26/07. Yes, 07. It is 10 months old now. I can not count how many times I have called both Carle Clinic and Health Alliance on this very issue. On the date of service, I paid my $20 co-pay. BC/BS paid Kai's dad $289, then he paid me, then I paid Carle Clinic. Then Health Alliance paid Carle Clinic $125, but not w/ a paper check. It was like an electronic payment or something, I was familiar w/ the word she used, started w/ "Cap". I have had HA call CC, they explained they had already paid it and gave them the date and reference number. CC says that they can't find the payment so they are making HA "prove" the payment and they have not given them the proof. But, CC says they just demanded that proof less than 45 days ago and most ins companies will wait to the end of the 45 days to respond and not to worry. I explained to the lady at Carle Clinic that every time I get one of these bills, I have to start making phone calls to get it resolved and not only do I not have the time to mess w/ stuff like this, I do not need the stress of it. They have been told where to look for the payment. What I didn't say, but was thinking is, how hard can it be track down a payment when you are given the DOS, account number, patient name, and a reference number? OMG! I feel sorry for the poor sole who gets the brunt of my frustration when I finally have reached the boiling point and I finally blow my top.

Today, I went to Kai's school and met w/ his teachers, counselor and the nurse. Everyone was very helpful. I will pick Kai up from school on the 3rd and we will bring all his books home so he can take them to his dads when he is discharged from the hospital. They will email him and cc me his homework from the 4th thru the 16th. Bryan will pick up Kai from Kai's dad on the 16th, then the Homebound teacher is supposed to start coming on the 17th. They gave me a form to have the doctor fill out and get back to the district special services office as soon as possible so they could get a teacher lined up. I called Huddleston's office to ask them if it was ok to fax it to them or should I fax it to Sharkey's office. Huddleston's office said Huddleston would need to fill it out but he wouldn't fill it out until the surgery. I explained I needed it before the surgery so the school could be looking for the teacher. They insisted it would not be filled out until surgery. So, I turn around and call Sharkey's office. They emphatically tell me that they can't fill that out because it has to do w/ surgery and they are not the surgeons. How difficult is it to fill out a piece of paper that has the diagnosis on it and what the "expected" duration of absence will be? RRRRRRRRRRRRRRRR!!!!

Last Sunday was our quarterly Marfan meeting and I made Bryan, Kai and Linnea go w/ me this time. I wanted everyone to meet Bryan and see Kai and Linnea again. Kai was totally unsocial and sat in the corner reading a book w/ his IPod on. I really wanted him to at least sit and listen to what people had to say. One lady had already had open heart surgery, so her family was giving us some very valuable information to think about. The few things that they said was to get an elevated toilet seat and a shower chair. In addition, might want to elevate whatever recliner/sofa you sit in regularly because it is hard to get up out of a chair. She said her breastbone hurt for 4-6 weeks and 7 yrs later it feels like the wires are getting closer to the surface. Man, that is gonna suck! Another lady in the group has a daughter that just had spinal fusion surgery and said that we could probably use her shower seat, they would probably be done w/ it by the time we needed it.

Why do I write about the hoops I have to jump thru on a daily basis with this whole situation? There are a couple of reasons. I happen to be lucky enough to be medically savy and have had to learn over the years how to handle medical/insurance issues and I want all of you to be able to take your own medical issues into your hands and be the driver on your health bus. I also hope that by telling you everything we have to go thru, you will understand when I am stressed out and may not be pleasant to be around or may not answer your emails or phone calls. It would be nice if someone who reads this would be in a position to make a difference in the lives of patients who are dealing w/ medical isssues. I have often wondered if God gave me this knowledge in order to become a patient advocate, but I don't think I could afford to take that kind of job and although it certainly would be challenging, it's not the intellectual challenge my mind craves. I am happy to help where I can and give advice when I can and I guess that will have to be enough for now. Maybe when I retire, that can be my job.

The only other big news is that I have found another place to stay, Haven House. The only draw back is that it is 15-20 minutes west of the hospital. They do provide shuttles to/from the hospital at 7:30, 12:00, and 4:30, provide breakfast at 7:00 and dinner at 5:00. And they said if you can't be there for dinner, then they would save it for you. They have wifi access, a computer room, and a gymnasium. They staff social workers to help you deal with stress (think we'll need that :-) There is no waiting list, we are in, and it is only going to cost $30-$35/night!!!! I need to call the hospital and find out if we drive there and park, if we will get our parking validated. The parking fees are horendous!!!!!!

I know I should post here more often so each blog would not be a book, but I can only bring myself to do this so often. I just feel like I need to veg to destress. I tend to get worked up when I am writing these blogs. It brings all the emotions back to the surface.

Kai goes to his dads this weekend and Bryan and Linnea are going to Bryan's dad's this weekend. I get the house all to myself from Friday night thru Sunday night. I am so excited. I am going to Evelyn's birthday party Saturday night. I am hoping that I will get a little cleaning done this weekend as well. We all have Monday off and I am taking Tuesday and Wednesday off as well to have time to wrap things up before we have to leave on Thursday.

Ok, time to go to bed now. As Paul Harvey says, "Good Day!"

Tidbits

2008-08-13T21:08:00.003-05:00

Yesterday when I got home from work, I received a letter from Kai's surgeon's secretary w/ some information regarding the surgery and the stay. They had Kai set to be at the Heart Station (where he gets his pre-op echocardiogram) at 10 am on Thursday Sept 4th, then at Same Day Surgery at 1 pm to meet w/ the anesthesiologist and Dr Huddleston. I called to get the first appointment moved back an hour to give us some wiggle room in the trip down there. You never know what will happen at that time of day. So, after some coaxing, I managed to get the lady to agree to move the first appointment to 11 am. I did also find out that Kai won't be admitted the night before the surgery, he would come to the hotel w/ us. I don't know what time surgery is yet. She said surgery would be calling me to give me all that info

I also sent emails to my surgeon, Dr Moon, and Kai's cardiologist, Dr Sharkey w/ several more questions. This morning, I received a reply from Dr Moon. I forgot to forward the email w/ his responses to my home address so I will put what I can remember under my questions.
To Dr Moon:
1) My son's pediatrician had ordered a blood test to see if his iron stores were high enough before his surgery. His were low so they put him on some Iron Polysaccaride to build them up. I called my Primary Care Physician and she said to check w/ you to see what all blood work you would need. I am assuming you do the "pre-op" blood work the day before surgery down there, but is there anything I need to have up here ahead of time like checking for the Iron Stores?
A: Unless you have been severely anemic in the past, there is no need to worry about that.

2) Do you or the anesthesiologist have a list of meds that are usually given during this type of surgery? If so, could you please provide that to me?
A: Meds vary for each person but I could as the anesthesiologist and he could give me that info when we meet him for my pre-op.

3) Does the operating room have the capability of video taping the surgery? If so, can you tape it? I would like to see what was done to me. I know, some people are squeemish and others have no desire to see, but that kind of stuff does not bother me and frankly, I would like to see inside me :-) If it can't be video taped, will they allow any photos to be taken? I had some taken during previous surgeries and had other doctors tell me that if I would have let them know ahead of time, they could have either taped it or taken some photos. So, I figured it can't hurt to ask.
A: Yes, they can video tape it, but it is a big hassle so they don't. If I want photos, I can ask the anesthesiologist and he can take them for me.

4) How are the ends of the wires that hold the breastbone together protected so they don't poke?
A: They bend them down.

5) Will I have any post-op checkups w/ you or are they all w/ Dr Braverman? If I have some w/ you, can we coordinate them so Kai will see Huddleston and I will see you on the same days so we are not making additional trips down there?
A: My follow up w/ him is really just to see the incision, so if I am doing well, I can go to my primary care physician and have her look at it. But if I need to come down for Kai's anyway, then he would coordinate the appointments

6) I have some papers that need to be filled out for work concerning the time I will be gone. Should I fax them to your office or to Braverman's?
A: I should fax them to Moons office

7) What about a handicap placard? Will I qualify for one now?
A: He says he certainly hopes not. (and from that, I gather he won't recommend one for me, which I would really like to have more for orthopedically, but just walking into work, my heart rate exceed 100/minute and I work up a sweat.)

I have not heard back from Dr Sharkey yet, but she said she would not email answers back to me, she would call me, so I imagine I will hear from her tomorrow or Friday. I asked her about the referral to the Ronald McDonald house so we could try to save some money on hotel bills. I sent her the list of PE activities for Kai this year and asked her to indicated which ones were ok, which were not allowed, and which were ok w/ certain modifications and to let me know what adaptations she thinks will be necessary when he gets back to school. I also asked her about the feeling I got from Dr Huddleston during my phone conversation w/ him and asked her if I caught him on a bad day or if he was always that way. I just felt like he was annoyed w/ me. And lastly, I asked her if she thought it would take 10 weeks to get the kids DNA tests back since the lab was supposed to send my results w/ the kids' samples, so they wouldn't have to search for the mutation, they would know exactly where to look for it. I look forward to hearing from her.

I went to lunch w/ Michele Jensen today and her daughter, Brianna, just had spinal surgery at St Louis Children's Hospital on July 23rd, so she was able to tell me everything about how to save money and what was available. Everyone please keep your fingers crossed and keep praying that we are able to get into the Ronald McDonald house.

It's amazing, since I have received dates and most questions have been answered, I really do feel like I am almost back to my old self. I was really productive Monday and Tuesday and work and it felt good. Today it felt like I was just spinning my wheels, but nothing to do w/ the surgeries, just one of those days.

Last weekend, I had a lot of energy for some reason (probably something like when pregnant women do their "nesting" right before they are due, there's a lot to get done on my home front before these surgeries) and I really got a lot done. We are getting ready for a garage sale and started digging all kinds of crap out of the attic and got rid of a lot of it (or at least going to sell it). If it doesn't get sold at the garage sale, then I might try to sell some of it on e-bay and what I don't sell on e-bay, is getting donated. Bryan doesn't want any of it to come back in the house. And, if you want to get down to it, neither do I really.

Ok, that is all I can think of right now. I'll let you know when I find out anything else or I decide to let the world into my very busy mind.

Later!

FINALLY! We have dates

2008-08-07T16:55:00.002-05:00

First thing this morning, Linda from Dr Moon's office called me and said she had spoken to Dr Huddleston's office and figured it out. Kai will have his Pre-op down there on Thursday Sept 4th and his surgery would be Friday Sept 5th. My Pre-op down there will be Monday Sept 8th and my surgery will be Tuesday Sept 9th. I am supposed to receive another phone call from Huddleston's office probably tomorrow w/ more details and then from some other departments about specific instructions for our pre-op and surgeries. Linda said she does not take care of getting the authorizations. There is another lady in the office that does that and she is not in this week, so she would probably call me next week w/ some questions or information.

So, today has gone pretty well. I was much more relaxed and able to concentrate and get some work done (with the exception of having some internal plumbing problems more than likely caused by all this stress), so I finished my work up at home this afternoon. It was nice to get something accomplished today.

I tried to call Wemlinger's office to see if they got what they needed from Braverman's office, but couldn't get thru, so I decided to call Health Alliance myself and find out if they had what they needed. Kathy from there was very nice. She told me what she needed and asked questions about Loeys-Dietz since she had never heard of it. She was very shocked to learn that including the kids and I there were only 186 people worldwide with it. Braverman's office was already closed, so I will call them tomorrow to make sure they fax the needed info to Health Alliance. Kathy said once she receives it, she sends it to the medical review board and they take care of the approval/denial and there shouldn't be anything else needed. I gave her my surgery dates.

I feel so much better now mentally, but I will not totally relax until I know all red tape has been taken care of. I also still need to call Social Services at the Children's Hospital to get a referral from a Social Worker for the Ronald McDonald house for us to stay in during Kai's hospital stay. I think I will also call the hotel we stayed at when we were down there in April and see if they will give us the same rate as the Parkway (which is right there on the hospital campus). After all, I am one of their "Rewards" customers. I am not holding my breath, but it can't hurt to ask. We really liked that hotel and it is close, so what the heck! Worth a try. All they can say is no, then we can try the Parkway. It is still $75 a night, but that's cheaper than anything else.

Pegram's office called today and said Kai's Iron stores are a little low, so they want him to take 150mg of Iron polysaccaride and 1000mg of Vitamin C together to help build up his iron stores for surgery, so I guess we will get that tomorrow. I think I will call Wemlinger's office tomorrow and find out if they plan to do that blood test on me. I need to have my thyroid checked this month anyway since they found a "nodule" on it (already had a biopsy and it was benign). Yeah, I know, what is NOT wrong w/ me?!?!?!? It really sucks, but there are a lot more things that could be a lot worse, so I am thankful for that.

Why can't people just do what they say they are going to do?

2008-08-06T21:12:00.003-05:00

By the end of the workday on Wednesday, Health Alliance had Kai's authorization request in their system pended for review. Mine was not there. Then Tuesday, Bonny from Health Alliance called me to get a few more details and said she was approving it right then for 6 visits and said all Huddleston's office needed to do was to call her w/ details regarding the surgery. Bonny was fantastic! Very concerned for our well being. I asked her about my referral. She said she only did the kids, but would ask that a case manager be assigned to me and told me who she was going to ask to be my case manager and would call her herself. I really felt relieved after talking to her and very happy w/ Pegram's office for being so willing to do what is needed w/out any delay or hesitation.

So, at 4:30 on Tuesday, I called Huddleston's office and told them about my conversation w/ Health Alliance. Debbie confirmed that they had the approval already and it had Bonny's name on it. I asked Debbie to please call Bonny and give her the info that is needed to get the surgery approved. Debbie also said the only thing they were waiting on was hearing from my surgeon, Dr Moon's, office for his available dates. So, I asked her what the first available Tuesday would be for Huddleston. She said it would be Sept 2nd because he was booked the week of Aug 11th, out the week of the 18th, already had a big case for the 26th. So, she was going to see if Moon would be available for Sept 5th. By the time I got off the phone w/ Debbie, it was too late to call Dr Moon. I was somewhat relieved that by Wednesday, I should have a date

Today, I thought I would give everyone most of the day to get things arranged and to get me called. While I was at lunch. my PCP office, Dr Wemlinger, nurse Suz called and said Kathy from Health Alliance had called her back and needed more information about the diagnosis and recommendation and Suz needed the phone number for Braverman. Hello!!!!!!! Don't they have the internet? Don't they have a physician network w/ those numbers? I got his number from the internet. I gave it to her. I checked the Health Alliance website and do see that my referral request is pended for review.

So, shortly about 3:45 today, I called Moon's office and spoke to Linda. Linda tells me that Huddleston's office has not contacted her, but Dr Moon had left her a note that said I would be calling to set up surgery dates and that it needed to be coordinated w/ Huddleston's office and that we wanted the surgeries on the same day. I told her that we did not want them on the same day, but Kai's first, then mine either 3 or 4 days later. I told her that Huddleston's office had told me that the first Tuesday they had open was Sept 2nd and asked if Moon was available on Sept 5th. She said No, he is actually out of town that day which she said is unusual because he is rarely ever gone. Figures! Just my luck. But Linda was very empathetic and said she would call Huddleston's office, but she wanted to talk to Dr Moon and he was gone for today. She would talk to him tomorrow, then call Huddleston's office. I explained to her that it wouldn't have to be Kai on a Tuesday and me on a Friday, Kai could be done on a Friday, and me on the next Tuesday.

After that, I just couldn't take it anymore. I can't concentrate on my work at work. I need to get things done. I have only been in this job for 9 months and this was not in my plan. I was going to go into this job and just kick ass and blow them away. I wanted to be the best new person they had ever hired. And now, this crap happens and I am finding it so hard to do what I am supposed to do. I feel like I am letting down my project teams, my testing teams, my boss, my department. I am having a really hard time getting past that. I just broke down, right there at work. The other major thing I never wanted to happen. I left a few minutes early and cried all the way home, almost to the point I couldn't catch my breath. When I got home, I had cramps, a headache was starting, all I wanted to do was go to bed. So, I did and stayed there until 8:00. No, I don't feel too much better, still crying on & off.

Maybe tomorrow will be better. Maybe tomorrow I will get dates and approvals. Good news is, Kai is doing great. The sad thing is it seems like he is watching out for me, reassuring me that he loves me. Bryan has been absolutely great in all of this. I asked him how he could stand being around someone like me who is so emotional all of the time. He said he finds the light at the end of the tunnel and focuses on it. I asked him what the light was now. He said the quality of life after the surgery. I am not so sure that my quality of life after the surgery is going to be any better and may not be as good as it is now. I don't count on anything anymore. I just keep praying that God will allow me to sleep solidly, awake refreshed, help me have a productive, worry free day, and hopefully get me some surgery dates I can live with.

Please continue to pray not only for our physical well-being, but for our mental well-being as well. I need it so bad. I am very lucky to have so many caring people in my life and I am so grateful. So, thank you to all who give me support every day. I truly appreciate it.

Still waiting

2008-08-04T17:56:00.002-05:00

Well, today I called Huddleston's office to see if I could get a date for surgery. Debbie informed me that they didn't even have a referral from Health Alliance to see Kai yet. Wish they would have told me that last week. That could have been taken care of last week. So, I called Kai's primary care physician and they submitted that today. I am not for sure, but I think Huddleston's office then has to submit the request for authorization for the surgery, or maybe that will be done in the referral. I am not really sure. So, then I turned around and called Moon's office for my surgery and then my primary care physician to get my referral.

So, still no dates. Who knows when I will have them. If I don't post anything new, then Idon't have anything new. Sorry.

Questions answered

2008-08-03T20:25:00.002-05:00

Ok, I sent the emai to Dr Dietz on 7/29/08 at 11:37 pm. On July 31st around 8:00 am, I was crying again and asked God to give me some type of sign to tell me what I was supposed to . It couldn't have been about 15 minutes later and I got an email response from Dr Hal Dietz himself! I was in as much shock about that as I was getting told about our test results. I couldn't believe he actually answered me. Basically what he said was that Loeys-Dietz is a lot like Marfan's in that it is not just one mutation that causes the syndrome, there are many mutations that cause it. In Marfan's they have found about 50+ so far. Since there are only 186 people (including Kai, Linnea, and me) in the world w/ Loeys-Dietz, this is the first time they have seen the mutation that we have. It is not to say that they won't see it in others. Apparently, jellyfish have the same mutation in the same spot too. Anyway, he said he could understand my wanting to wait to 5cm to have the surgery, but he said since this type of surgery is so safe, waiting would not be the choice that he would make for himself if he was in the same situation. I really felt like that was the sign God was giving me. To me, it just really seemed evident. When I got done reading that email and had sat back and thought about it, I decided that I would go ahead and have this done along w/ Kai and just get it out of the way. A peace came over me and it truly felt like a burden had been lifted. Again, I think that was God at work. Oh, and Dr Dietz said he would be interested in studying our family's cells, so I am REALLY excited about that. Even if it takes 10 years to find out anything significant, the kids would really just be starting their adult life. So, everyone pray that Dr Dietz does in fact decide to study our cells and can discover something that will help not only our family, but others who may be afflicted.

After all that, I called Dr Huddleston's office back again. Once again, he was in surgery, but Debbie said she would have him call me when he got out of surgery. So, I was not expecting a phone call until the afternoon. About 11:00, he calls me. I told him I assumed he had spoken to Dr Sharkey about Kai, but he said no, all he had was a message from her, but he hadn't called her back yet. Ok, now, that kind of pissed me off. It had been at least 4 days if not more. Why hadn't he called her back? Does he take this approach w/ all the patients? I just didn't get a good first impression. He certainly was nothing like my surgeon. In fact, I kind of felt like he thought I was a pain in the ass for calling everyday. I know he is busy, but I guess I kind of felt like a 20 minute conversation w/ a confused parent of a child who he will be operating on wouldn't be that big of deal and in fact, would stop the parent from calling if he'd just address the questions. Anyway, I got all my questions answered from him.

I don't have a date yet, hopefully tomorrow or Tuesday I will have a date. But, here's how we see it working. We are going to both get this done close together and get it over with. We would be at St Louis Childrens Hospital on a Monday. Kai would have an echo, chest xray, and blood work, then see Dr Huddleston for our consultation. Tuesday morning, he would have his surgery which would last about 5 hours (possibly a couple more if he is able to fix his breastbone at the same time). He would be in the ICU and that night, he would get his breathing tube out. Sometime on Wednesday, they would try to get him up and out of bed. Thursday, hopefully in the morning, he would move from ICU to a regular room. Then (if timing works out) I would have my pre-op in the afternoon which consists of a heart catheterization and blood work. I think I have to stay still for several hours after that, so I would not be able to see Kai again unless, I could go later in the evening or something. Friday morning, I would have my surgery, again, lasts about 5 hours. I am hoping Kai would be well enough to be able to be wheeled over in a wheel chair to come see me. I would get my breathing tube out that night. Saturday, would get out of bed. Sunday I would move from ICU to a regular room. Kai might be able to go home on Sunday. If not then, then probably at least by Tuesday. I am hoping that when he is discharged, John & his parents will be able to take him back to John's house and take care of him until the next weekend. I would be discharged somewhere between Wednesday and Friday. Sometime that weekend, Bryan would meet John or his parents w/ Kai in Ogden and bring him back home. Bryan will have been off work for 2 weeks by now. So, I am not sure if he will be able to take another week off or not. If not, then my mom said she would stay.

I am supposed to meet w/ Kai's school counselor, school nurse, and PE teacher the week of Aug 11th to talk about adaptations that Kai will need and the homebound teacher coming over.

Kai came home today after being out in Vegas at his grandparent's house. He is now 6'1" !!!! He has grown an inch and a quarter. I couldn't believe it. After we got home and had supper, I told him. He took it pretty well. Cried a little bit, but not nearly as bad as I did, so I was very proud of him. He hasn't had time to think of too many questions yet. I tried to be as explanatory as I could when I told him. So, he did pretty well, I think. He was more upset when he was talking about wanting to be a pilot in the Air Force and me telling him that w/ his heart condition and having had open heart surgery, he would never get into the Air Force. So, I am wondering if he will have more questions. I did tell him that I have a counseling appt set up for him on Tuesday.

So, that's where we are right now. Just waiting on a date. Dr Braverman is supposed to call me tomorrow morning and I can ask some of my remaining questions. When I have anymore news, I will post it. Keep checking back.

The crying has started

2008-07-31T21:12:00.003-05:00

I almost made it thru the phone call from Dr Braverman w/out crying. You see, I was convinced that the DNA test would come back negative. We didn't fit the normal profile for Loeys-Dietz. I really thought that we would end up w/ something hadn't been discovered yet, because if there is ever an exception to any medical rule, we would be it. Dr Braverman said he had alrady asked Dr Dietz to review the test results and provide his recommedation. He had already talked to Dr Sharkey about it. They all agreed, Kai and I needed to have our aortas replaced immediately.

First thing Monday morning, July 28th, I received a phone call from Dr Marc Moon, my cardiothoracic surgeon. He was fantastic. Very upbeat, positive, reassuring. I got good vibes from him. He answered all my questions right there on the phone and told me if I had anymore to feel free to call or email him.

The next phone call was from Dr Sharkey. She was very patient with me and very understanding and genuinely concerned about our family's ability to handle the news we were just given. I didn't get the panicked feeling from her that I did Dr Braverman. Now, I was even more confused than ever. The average age of death for a Loeys-Dietz patient is 26 and not one person in our family had ever died of any type of dissection and there is major longevity in our family. This genetic flaw was passed down to me from my father who got it from his mother (my grandmother) and she got it from her mother (my great grandmother)/ My great grandmother was 99 1/2 when she died. My grandmother was 89 1/2 when she died. My father was only 68, BUT had fallen down some stairs, had a brain injury, ended up paralyzed from the waist down and complication after complication from being basically bed-ridden.

How could this be? There were so many characteristics that just didn't fit. I had to get a copy of the genetic test report. I had to see this for myself. There was something in Dr Braverman's voice that told me that this was not a cut and dried case.

My next phone call was to Dr Charles Huddleston, Kai's surgeon. He was in surgery, would have to call me back that night or next day (Tuesday). Tuesday afternoon rolled around and still no phone call from him. So, I called his secretary again. She said she would give him the message again. Dr Braverman's nurse called me and asked her to fax me a copy of the report. Was I blown away when I saw that. It stated that they had never seen the mutation that we had. I knew it! We had something that hadn't even been discovered yet. Ok, now I am really questioning the need for this surgery. I need some answers. I wish I could talk to Hal Dietz myself. Well, I know this will not be easy for Kai, so I set up a counselling appointment for him. I have already spoken to his school about getting a homebound teacher for him while he is out of school.

Wenesday afternoon rolls around. Still no phone call from Dr Huddleston. By this time, I can't take it any longer. I went to the internet in search of an email address for Hal Dietz. I want him to explain how he came to the conclusion that we had Loeys-Dietz when the report says they have never seen this mutation before. I found it! When I got home from work, I wrote a HUGE email to Dr Dietz, Dr Braverman, and Dr Sharkey explaining my concerns and asking them to please help me understand, hoping I didn't piss anyone off and figuring I would probably not hear from Dr Dietz. After all, I am nobody to him. But, at least I had gotten that off my chest.

The day our lives changed forever......

2008-07-31T21:08:00.001-05:00

For the last 7 years, we have been told we had Marfan Syndrome. That is, until we went to St Louis and saw Dr Angela Sharkey (pediatric cardiologist) and Dr Alan Braverman (adult cardiologist). After a lengthy session revealing our family history, Dr Sharkey said she didn't think we had Marfan Syndrome. She thought we had Loeys-Dietz Syndrome. When we walked out of her office, I was totally shocked, but I still had to see Dr Braverman. He agreed. When we left St Louis, my whole world had changed. As if Marfan Syndrome wasn't bad enough, we had to have Loeys-Dietz. You see, w/ Marfan Syndrome, your main risk is of an aortic dissection (burst open), leaky heart valves, scoliosis, detached lenses in your eyes. Ok, bad, but manageable. But with Loeys-Dietz, you are not only at risk for aorta dissecting, it is all the major vessels in your body (aorta, renal arteries, carotid arteries, iliac arteries), oh and the risk includes ruptured uterus, bowels. There are some things w/ Loeys-Dietz that we don't have: a split uvula (that hangy down thing in the back of your mouth), cleft palate, skulls that fuse too early. All three of us have the hypermobility (Kai is the worst), Linnea was born w/ a foot that was close to being a club foot and both feet were so flat the big bones on the inside of her ankles almost touch the floor. Kai has the pigeon chest, but only on the left side. We all have stretch marks. We all have scoliosis. Kai has dural ectasia.

Kai's aorta is now at 4.7cm. Mine is at 4.4cm and Linnea's is at 3.2cm. A "normal" adult's is 3.0. A Marfan patient would have their aorta replaced at 5.0cm, but someone w/ Loeys-Dietz has even more fragile vessels, so they have dissected as early as 3.0cm. Thus, the need for Kai and I to have our aorta's replaced. Our CT scans showed no other vessels that were dilated. Thank GOD for that!

I have had the DNA test verified our worst fears. I got that phone call on Friday, July 25th. I have been reeling since.