Engraftment day 2

Today was pretty much like the last few. Cael had a bit of a fever today, which is likely due to the engraftment, and his rash has spread to most of his body. The doctors have added a lasik drip (diuretic) because his weight is increasing, probably due to an excess of fluid in his body, called hypervolemia. They want to make sure he doesn't have too much fluid and let it get into his lungs, so they want to make him pee a lot to get all the fluid out.

The doctors today don't think we will be leaving in 2 weeks. I figured it was a little ambitious of a timeline. But that is ok. They just want to make sure he is ready to leave. I'm hoping by the end of the month we will be ready to go. They want to make sure he has engrafted, which will be around 14-21 days from the transplant (so another week or 2), he needs to be off oxygen day and night (he needs it when sleeping right now), and he needs to be able to take all his meds orally (right now he is throwing up too much). The ribavirin (breathing treatment) can be given orally when we leave, if it is still needed. He can leave the hospital while still being positive for RSV or paraflu, but they want to be sure he has T cells that are functioning properly, to make sure he will be able to fight off the rest of the infections without medical intervention at the hospital.

He did have a little stretch of good time today. When the physical therapist came, he was very happy and playful. He did a few of the things she wanted him to do. He seems to do a lot more when no one is trying to convince him. I can't wait to get out of here and be able to plop him on the ground with all his toys and just let him try to move around. I think that is going to be the best way for him to start moving. I think the physical therapy is helping to show me some ways to help him, but he just doesn't seem to want to do the things she is trying to convince him of. I feel like I should record him doing things when we aren't pushing him, just to prove to the physical therapist that he does! lol. I know she believes me when I say he does, but still...

Cael is going to LOVE Christmas time. I was opening something with tissue paper in it the other day, and I gave all the paper to Cael. He just loved playing with it. I think for Christmas we will just wrap a bunch of empty boxes and let him have fun ripping everything open. That's all they care about anyway, right? :)