You want the good news or the bad news first?
Let’s start with the good news!! As of 1pm today (Wednesday November 10), we are discharged and heading home. Henry has had a great morning. He slept in 2 hour increments last night from about 9pm-6am, so not horrible. Once his anesthesia and nerve block wore off and we were able to get his pain manageable, it’s been a game changer for him. This morning we got lots of smiles, a few giggles and lots of jumping. He seems to be more of himself now. We’re on our way home and he’s currently snoozing away.
Now for the not so good news. For those of you that messaged us last night to check on us, I’m sorry you got the blunt of my emotions. It was TERRIBLE! From the moment we got in the room to see Henry (around 1:30) until he went to sleep (around 9), he basically screamed the whole time. From the anesthesia and nerve block wearing off, to not getting pain medicine on time, it was a struggle. I don’t ever want to say that we had a terrible experience at CHOA because the whole experience wasn’t, however they seemed like they were short staffed and when you’re on a neurology/epilepsy floor with kids that are more critical that you, you kinda get left behind. And for this mama (and daddy) it was quit frustrating. To see your child in so much pain and nobody helping or giving medicine, it wears on you. For most of the day/night, he was only “settled” (I use that word lightly because he wasn’t really ever settled) if I was standing with him swaying, if I sat, he screamed. So on top of being emotionally drained, I was physically sore, so my emotions got the best of me last night and I just lost it. I couldn’t hold back the tears any longer. My baby was hurting and I couldn’t take his pain away. Nothing makes you feel more like a failure as a mom/dad then not being able to help your child. In that moment, I felt like a complete failure. I know there was nothing I could do to “help” and I was doing all I could do but it didn’t feel like enough.
So what does the next couple days look like for us/him? Probably a roller coaster. As promising as it has been today to see his personality and his smiles, his plastics team said tonight could be pretty rough. Nighttime is typically the worst, so we’re expecting a lot of sleepless nights for the next couple days, but we are thankful to have so much prayers and support as we tackle this recovery with him.
They say it takes a village to raise a kid and it has been evidently clear during this time. Whether it was G and Memaw taking shifts to take care of Hazel, sending money to us for us to eat while we were there, signing up for the meal train to take the burden of cooking dinner off for the next couple days or above all, praying for us, it means so much to us and every ounce of pray has been felt. It is nothing short of prayer for why we are heading home already. So for that we are thankful.
How you can continue to pray for us over the next couple of days/weeks: pray that his pain continues to be manageable and that we stay ahead of it. Pray that he continues to get good rest. Pray that we are intentional with spending time with Hazel but that she also understands that brother needs a little extra attention right now.