Caleb and I spent all day at the hospital both days. Not a lot of fun...lots of sitting and waiting. Tuesday, he had PFT's and we met his new pulmologist. He thought Caleb's chest CT and xray looked "stable" and although they are far from normal, he gave Caleb a thumbs up for the transplant (once the pesky virus goes away.) This doctor actually trained Caleb's regular pulmologist...small world! After that, we went to the BMT clinic and met our dietitian. I really liked her because she didn't start lecturing me about how skinny he is. She saw how active he is and commented that she could see where all his calories go! She is devising a plan to help him post transplant so that he won't revert back to his behavioral eating issues we have worked so hard to mostly overcome. She did mention that he will likely be on long term IV nutrition.
After that consult, we rushed over to have his echocardiogram and EKG. The echo took nearly 2 HOURS! For those of you who know Caleb, it was not easy for him to lay still that long. One of the doctors doing the test asked him "How does such a big personality fit in such a tiny body?!" At the end of the test, they asked him if he wanted a sticker. His reply was "Just a sticker?" I had to agree with him...I thought he earned more than a lousy sticker too:) Much to my surprise, he also earned a golden ticket for a cardiology consult, due to them finding 2 congenital heart defects! Can this kid catch a break?! Thankfully, neither one of the defects will require surgery at this point and will not affect his transplant. However his valve problem will have to be monitored for life.
Today we had to be at the clinic bright and early to eval C's cough again. He was really wheezy today so we will continue his albuterol inhalers and have added Singular. I mentioned that Isaac is still croupy too, so they wanted him to get some steroids on board to get him over this hump as well. After that, we were off to Caleb's eye appointment. Since he was premature and had ROP, they wanted to make sure everything was okay in those "beautiful eyes" (That's what every single person we meet tells him he has.) His eyes checked out okay! Last on our list was ultra sounds of his arms to make sure he's okay to have a PICC line, which is what they prefer to use here. Poor guy feel asleep during the ultra sound. He was wiped out! That test checked out okay too! He is scheduled to have his PICC line put in on Monday, but we have to go back to the clinic on Friday to check his lungs/cough. They seem to think everything will be on target, I on the other hand am a little leery of this cough. He doesn't ever get coughs like this and I want him 100% before his transplant. On the other hand, I trust them and their judgement so we shall see what happens.
Tomorrow Caleb has the day off!!!! and we will be moving out of the hotel. The Elmore family has graciously offered to let us stay in their guest house. It is in a beautiful (and safe) neighborhood only 3 miles from the hospital. And an extra bonus is that they have two adorable kiddos who will be be awesome play mates for Mr Isaac. Thank you for those who prayed for our housing. And thank you to the Elmore family! Our prayers have been answered!
It's getting harder to keep Caleb entertained at the hospital. However, he continues to crack me up!!
He put the heart patches over his eyes and was walking around like a blind man and cracking everyone up:)
Texas Children's has an awesome model train set up. It has buttons that the kids can push to make certain trains move. Caleb really looks forward to the end of our appointments so he can go and see the trains. There are so many trains to look at that we still haven't looked at all of them!
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