We continue to be very grateful to the donor and family for choosing to give life to our little one. We're thankful to everyone who has chosen to be a donor and save a life - or many lives.
Al went home feeling okay and on a very small dose of oxygen, about 1/32 liter. After transplant, checkups are twice a week for the first 12 weeks and then switch to once a week. He was doing well for a few weeks, even had a Curious George birthday party planned for about a month after his actual birthday.
Then, he got sick again. His breathing got worse and worse. His oxygen flow went up to being on 3/4 to 1 liter all the time - even more than before the transplant. So much that the oxygen delivery company got mad at me for calling asking for more all the time. His whole body swelled up and he threw on an extra 1 kg in water weight. He would wake up with his face so puffy that one eye would be swollen shut. And he was miserable. He'd cry all day long and nothing would console him. It was a lot worse than before the transplant.
At first his doctors thought he had gotten pneumonia and he started antibiotic treatments that didn't work. The were baffled because all the outward symptoms pointed to rejection but his ECHO (heart ultrasound) and EKG's all looked fine. We don't have any pictures of that time. Life was so miserable for all that there wasn't much time for any picture taking.
Eventually we decided to treat him as though he were rejecting and start a 4 day, 8 dose IV steroid treatment. Homecare came out to the house and gave the effusions. Several days later, it looked like it had worked. He perked up and lost his extra fluid weight and within another week or so was able to go completely off oxygen.
Now at this point symptom-wise, Al is fine except the reflux and feeding. He still has a hard time taking much of anything by mouth. He did just start eating dairy again and has been tolerating it. Yogurt is his favorite new food. He still gets most of his nutrition from taking formula through his tube.
We just have our fingers crossed that Al will be able to continue to grow and hopefully learn to do more toddler things like eat and play and become mobile and talk. Kids do not deserve to have this kind of life. But he's been a champ and gotten himself through it.