PT, CT, meeting with doctors

A physical therapist came by yesterday to assess Cael's development. He isn't crawling or walking, which isn't so concerning to me, since I know all babies do that in their own time. However, he still isn't sitting up on his own very well. He still topples over whenever he reaches for something or if he leans too much one way. The PT said he is only at a 6 month level right now. His back muscles are pretty weak. Some of that is due to him being sick for so long, but some of it is probably mine and Adam's doing, from us doing too much for him. The PT is going to come by 3 times a week to work with us and him to get him stronger and able to do more. Even once he starts the conditioning, I think they will continue to work with him.

Cael had another CT yesterday. The radiologist said the scan looked the same as the last CT from 2 weeks ago. So his healing has plateaued. The transplant doctor said he needs to talk with the rest of the transplant team, but he thinks they will be moving forward with the transplant process next week. His conditioning should start early next week, with the transplant being about 10 days later.

We had a meeting with the Allergy and Immunology doctors, the transplant doctor, and the endocrinologists today. The endo doctors said they aren't going to do anything else with his calcium since it has stabilized within the normal range. A&I said there is nothing else for them to do right now, and that he is ready to go to transplant. The transplant doctor, as I said, needs to talk with the team, but thinks we will move forward. He also said that since Cael still has the para influenza and RSV, it is going to be a very difficult process to get him through the transplant. He even told us that there is a chance he will not make it through. We always knew there was a chance that he might not live through everything, but it was more of an outlying possibility. After talking with the transplant doctor, it seems like a much more real possibility. As I understand it, the reason he said this is that once Cael gets the transplant, his new immune system will cause his lungs to inflame as the immune system tries to fight the infections that are there. The inflammation makes it harder for him to breathe. There are things they can do to help him breathe, but there is still a possibility that he will not be able to, and it could lead to death. I may not have all of that exactly correct, since once he said there is a chance he could die, I think I kind of glazed over for a minute.

We also asked about the timeline of things. It sounds like the average hospital stay is about 4-6 weeks from the start of conditioning, and the time required to stay in the Houston area is about 3 months after discharge. This is a lot longer than I was thinking. Plus with the infections, he might have to stay in the hospital longer than 4-6 weeks. Of course, since we have a doctor in Austin who used to work here, and is still very much in touch with the doctors here, we might be able to go back to Austin sooner than the average patient. We really won't know the exact timeline of all that until he has had the transplant and they see how he is doing.

Even with the information we were given today, I am still thinking positively about everything. Cael is such a fighter, and he will continue to do just that through everything.