Made of Gray

Finally got some Web

Holly D Gray3 Comments
You would think that if a family is planning to spend 6 possible months or more at a hospital and close to a million dollars, they would let that family have access to a blogspot address. The hospital restricts Caleigh's blog site as a possible 'bad' site. Ugh.

So I finally made it over to the hotel with the computer. First of all, Caleigh is doing as well as expected. Eric and I are beyond exhausted at this point. On Monday things started off with a bang only 30 min. after we arrived. An abdominal x-ray, blood work, and a heart, lung & abdomen echo. We met with the transplant team that came into the room looking like a bunch of white coat wearing sports team members. Picture Grey's Anatomy residents standing around a bed and that's what we had. I don't guess that I have ever experienced a teaching hospital before, but it's a bit overwhelming and reassuring at the same time. Monday and all day Tuesday we had a double room all to ourselves. It was great until we got a roommate..... Lets just say that they weren't a transplant family and they are so loud. I'm pretty sure they are the reason Eric and I are so tired. Caleigh can't sleep very well because of all the noise and we are ultimately hoping the family leaves tomorrow. The hospital is in the process of building a new facility, but until then quarters are tight and there isn't much room to spare.

So on to Tuesday, we met with the transplant team again, among many many others involved in the process. I sat through a 2 hr educational class about intestinal transplant with another mom who thought MS was a virus.....It's hard to believe that some of these parents aren't as serious as we are and haven't even tried to educate themselves about their child's future. It's just a tad bit frustrating. So the same day Caleigh went and had a barium enema contrast study. It showed the usual large dilated loops of bowel and at the end of the small bowel, right at the connection to her colon there is a narrowing or stricture. We knew this before coming up here but wanted a second opinion and so did our surgeon. We spoke with the pediatric surgeon and he made some surgical suggestions. So now we need to decide where to have the surgery to correct this problem. Pitt or Home?

Today, Wed., Caleigh had an ultrasound of all her major blood vessels. She did really well during the long look at things. Because of the barium enema the day before, Caleigh had over 20 liquid stools on Tuesday so she was visibly dehydrated. Her heart rate was up, lips were dry and her spit was thick. She was weak and had a high temp of 99.8 at one point. They started some iv fluids to help her out and within a few hours Caleigh seemed to be feeling a little bit better. We met with the neurology team today as well and they were nice but had no other suggestions. In fact some of the neuro's at Cooks came from up here at Pitt. Tonight they will do more blood work and because they have had to do so much blood work everyday they are going to check to see if Caleigh might need a blood transfusion. We'll find out tomorrow if this is the case. Also tomorrow we will take Caleigh to get an upper gi contrast study and that will be our last 'test' before the whole team meets and gives us their recommendation.

The team has also made some valuable changes to Caleigh's TPN. Hopefully, this will help further along her growth and keep her little body in balance.

We are tired, Caleigh is tired and we are ready to make it back home, but at the same time getting a different opinion is very valuable and I think worth the trip so far. I'm interested to hear what they have to say.

Hopefully, I will be able to get back over here to the hotel to post again before we leave. I apologize for the dismal post. I'm just feeling drained.......
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