Yesterday Joseph came home from Primary Children's Hospital! We are excited. I think it was a bit of a let down for him to realize that at home things are just about as boring as they were in the hospital. He still feels the same, the same stuff still hurts, and he doesn't have 24 hr access to whatever he wants to eat. But he's home, and that has to count for something.
Thank you all for your kind wishes and prayers for him and our family. He can have visitors at home where we can control better the sickness that might come in. Visitors must be healthy and they can't have even been around sick people at home, school, work, etc.
He will go up to Primary's three times a week for check-ups. Fridays will also include a biopsy to test for rejection. After three to six months he will be down to once-a-week visits and biopsies every month or two. A year from now his check-ups will likely only be monthly and biopsies every three to six months apart.
The real kick in the *** is his medicine. The attached picture shows all the medicine bottles he came home with. What you see is a one month supply. We paid $1000.00 for that pile. That is our after insurance cost. There are some state programs that might help us pay for it all. I think that some of the more expensive meds are only needed for the first three to six months. We've learned that the spot on your state taxes (like right at the end next to your signature) that asks if you want to donate a few dollars to a 'transplant fund' goes to help families pay for the cost of medications after transplant. So start doing it if you haven't been or didn't understand what it was (like me).