We got the hospital around 7 PM and around 9 PM they were ready to start the bolus steroids. The transplant fellow told us to except a very emotional little girl over the next few days because steroids tend to make kids emotional, crabby, and (hopefully) hungry. They administered the first round of steroids around 9 PM Friday evening and every 4 hours after that for the next 24 hours. By 4 AM Saturday morning - the steroids already began to do their job as Addie's liver functions tests were already much lower!!
About 80% of liver transplant recipients reject within the first 8 weeks after surgery. Believe it or not, this is not a bad thing. Its shows that Addie's body is doing its job. That her immune system works well enough to fight the new liver and to try to attack it to get rid of it. And sadly, this isn't a once and done thing. Addie's immune system will continue to want to attack and "kill" her new liver. Addie will need to have labs done weekly (to start and as the weeks and months pass, we can spread them out) so her team can watch her liver functions and adjust her immunosuppression medication if needed. Its a balancing act. We don't want to suppress her immune system too much - but we don't want her liver to reject either. Thank God we have a team of doctors that are experts in liver transplants and know exactly how to handle this!!
By Saturday afternoon we started to notice that about an hour after the steroids were administered - Addie didn't become grouchy, she actually became hyper. It was hilarious! She'd literally ran around the halls of the hospital and yelled and giggled. We loved it. This was a very welcomed behavior after the past 7 weeks of Addie lacking energy.
Addie's liver continued to respond nicely to the steroids. By Monday morning, Dr. Shindi was so please that he started talking discharge. He wanted to take her off of the IV steroids and switch her to pill form so we could start our transition to discharge. He wanted to see what her labs looked like on Tuesday morning - and if they were good, he was kicking us out!! He was also talking about pulling Addie's ND tube - which was terrifying because we still had a little girl that didn't want to eat or drink. But from his experience, he finds that kids start to depend on the ND tubes for nutrition and hydration and won't do much eating or drinking until they are out. Worse case scenario - we put it back in (easy for him to say...). So Ben and I discussed Dr. Shindi's suggestion and decided to give it a try.
Addie's liver numbers were close to normal by Tuesday morning so her team started the paperwork for discharge. And as the team was working on discharge papers - our favorite Physican Assistant, Tammy, came in and pulled Addie's NG tube. Luckily for me, I have a husband that can handle watching these types of things - because when I know Addie is going to be in discomfort, I have trouble watching. So, I stood by the door and Ben sat with Addie and with a little whine - and a cough, it was out. Just look at that beautiful face.
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