After Addie's biopsy and the insertion of the ND tube - Addison hit a wall. She started to withdrawal from us. She stopped talking and would barley look at us. She was telling us (without using words) that she was done. We rocked her world and she had no say in it, so now she is showing us her anger by withdrawing. We were not prepared for this. We were prepared for the pain and for her not wanting to eat and for her to feel like crap for a few weeks. But we were not prepared for Addie to get angry and withdraw from us. But as we've done with every other step of this journey, we did our best to just be what Addie needed. Even if that meant, letting her alone and giving her a tiny bit of space.
Her team also saw a difference in Addie and heard our concerns so their solution was to discharge her. Her liver numbers where looking so much better since we started treating her sinus infection and we had the ND tube in place to give her nutrition and hydration so there was honestly no reason to keep her inpatient. Especially because their experience showed that kids do much better recovering outside of the hospital. And they were only discharging her to the Ronald McDonald house which is directly connected to the hospital. So if we needed anything, they weren't too far away.
Ben and I certainly weren't feeling ready for this. We figured after the set back this week- they would want to keep a close eye on her. So we were a bit surprised as they started pushing to get her out of the hospital. We were very nervous about working the ND tube and administering all of the new meds (she was on 8 new meds at the time of discharge) on our own. And we debated whether or not this was truly the best decision. But we knew, at some point - we'd have to put one foot infront of the other and learn how to walk this path. We knew that because we were doing this together, we would be perfectly fine. And this would feel just as scary if we waited a few more days to take this step. So we did it. We walked our little girl out of the hospital just 16 days after a liver transplant. We needed to try to find our new normal and to give Addie the chance to finally feel like she could just heal and recover in a safe place that only included her family.
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