Summary of our week at hotel Mott.........

Starting where I left off..........so......after her ordeal on Monday from getting her line placed, Tuesday was spent just recovering. It was a mellow day of checking her levels, keeping her comfortable, and lots of rest. Thank goodness for an uneventful day! On Wednesday morning I was awaken by a phone call from one of the fellows working in the unit that week. She said the Dr. G wanted to take her down to the cath lab asap. What!? (good thing I had been sleeping in the ICU waiting room!) Apparently he had heard a gallop ( third heart beat) on Tuesday but just attributed it to the craziness from Monday. However, it was worse on Wednesday when he listened to her. His thoughts were that the extra beat was due to rejection. Checking pressures and getting biopsies was the only way to confirm it. So, off to the cath lab she went. Was a little nervous since we knew what had happened on Monday but then again, she was hydrated and starting to feel better. In fear of rejection, Dr. G started her on a whopper of a dose of steroids just in case the biopsies told us bad news. Biopsies came back later in the day, not rejection! great! But now what!? Not to mention that the pressures on the left side of her heart were now 20. They should be 10! Great! I am thinking at this point, " we came in here for diarrhea problems and now we have heart problems!" ugh! In the meantime, we are still meeting with GI and everything sample that has been sent in still keeps coming back negative. Because of all the stuff going on with sedation, etc., she hasn't been eating hense the diarrhea has gone away and tummy looks better. This is also what the GI people kept saying as they would examine here in the ICU. Well, duh! It's going to look better and decrease when your not eating........I was really about to smack the next person who came to me with that as sounding like it was great news! Grrrrr.........at this point, it was going to be extremely difficult to figure out what was going on. We are pretty confident that the flagyl is working! Keep your fingers crossed! Moving on.........Wednesday I headed home to be with the boys and for a photo shoot that I had scheduled a while ago. I also had to be home for my best friends wedding on Saturday. On Thursday after work, JR headed over to A2 to be with the princess for the weekend. While I was away, She developed elevated sugar levels. This was because of that whopper dose of steroids. If it's not one thing, it's another! :) while still monitoring that, she was still on tpn and lipids to control her nutrition. It was decided to give her a low sugar/low lactose diet to take it easy on her colon when she starts to eat. So far so good and it was an uneventful weekend for daddy! I headed back over on Sunday afternoon so that JR could go back home to work. Sunday was our 12th wedding anniversary. Saw my groom for about 1 hour. Romantic huh? Lol oh well. There will be more!
Now we are to Monday.(yesterday) Tpn and lipids were taken off because she was eating fairly well and almost back to her baseline in here weight!!! Yay!! Getting used to this whole low sugar/low lactose thing, but we are getting it. Uneventful.....so I thought. Lindsay now has an elevated heart rate and we can't figure out why. We upped her atenolol but it hasn't seemed to be making any difference as of yet. Not sure if they will really do anything about it but we I'll figure that out in rounds tomorrow (Wednesday). Today, she still has the higher heart rate and now we are battling with nutritionists on how many calories she should be getting. They say a minimum of 1480 per day. What?!! I don't even think that I eat that much! I know it's possible but......I'm an adult!! Not only that, but our problem is no longer her weight! She is back at her baseline and keeps gaining .1 kilos everyday! She can't keep doing that. I don't want to end up with an obese child! Ugh! Ever get the feeling that you think you are being listened to but you're not? Lol well, long story short, I think I'm winning that battle. Cardiologists are really not worried about it, so I won't be. :) the question now is the heart rate. Lindsay had some funky electrical things happen on her monitor the other day that Dr. G wants Dr. Bradley to look at since he is the expert in that field to see if he thinks we have an issue. Didn't hear anything today so I am assuming that they will have an answer tomorrow by the time they round on her. If it is a problem, there is a med that will correct the electrical problem and lower her heart rate. Ok, great. Let's get on with it then! :) antsy you ask? Pretty much! You see, Cruz graduated preschool on Thursday and this mom will not be missing it!! Thanks to the fabulous Devon, mommy doesn't have to worry! She will be staying with Lindsay tomorrow night and Thursday morning so that I can go. Love you girl! Who better to stay with her than a physician from U of M!! :) She knows people......lol
Tonight I had a visit from GI. Once every couple of weeks, they meet with the pathologist (which is one of the very best in the country......so they tell me) and discuss as a group all of the latest scopes and biopsies over that time period. Of course our princess was one of the topics of discussion. He discussed in detail the areas of concern. She did have some areas in her small bowel that indicated that she does in fact have celiac disease. However, her blood tests indicate otherwise. Hmmmmm well, because those two findings are different, we can try a few things to see if they work. Once Lindsay has completed her cycle of flagyl, and the diarrhea stays away, then she should be fine eating whatever she wants. If the diarrhea returns after the flagyl is completed, then we take in a sample to make sure that she doesn't have anything else first. If that comes back negative, then we are to start a gluten free diet for at least two months to see if that works. We should really know if it does within two weeks. I asked that question about how soon will it work because if she is till having diarrhea , I don't want to end up in the same boat that we are in now. so, only time will tell on that one. She will take her final dose of flgyl on Friday.
Hopefully this got you caught up. Crappy to not really have a definite diagnosis but at least she is better and the end is near! I can feel it! :) the only obstacle after we get the ok to go home is getting her line out. She will have to have it out in the cath lab and sometimes they have to coil it to prevent bleeding. Mainly because of where it is placed.....in her liver.
Please pray for a successful rounding tomorrow and that everyone has an answer to our problems! Lol I will update as soon as I know the plan! Lindsay prayer warriors rock!