We made it home. And we hope this is the beginning of something amazing. Our release however was not because everything is going easily but reflects the fact that our team knows we know how to handle Maddie’s needs and that the hospital is a really tough place for little kids.
At around 5 pm yesterday, Maddie woke from sleep and it was clear that she had turned a corner in some respects. She could hold up her head much more easily. She smiled. She was making normal Maddie faces and responding the way she should to us.
She was also very clearly under the effects of steroids. They use them at Duke post-surgery to help reduce swelling of the brain. Steroids make her pretty uncomfortable. Unless you’ve seen a young non-verbal child on steroids, it’s a little hard to explain, but it’s like she just doesn’t know what to do to make herself feel right. Nothing pleases her, she wants to do something else, try something else, but then when she does, it’s no good and she just needs to return to the safety of cuddling. One positive of being under the influence of steroids is that it increases appetite usually. And she finally decided she felt like eating more than gummy bears. And she did not vomit.
It was a longish night with not as much sleep (steroids make it hard to settle down) and lots of visits from residents. I had asked to have a consult to talk about reducing the steroids once it was clear she was about to come unglued. Hospitals are never fun but they are particularly difficult for kids on steroids and so I knew then we needed to step up efforts to get us home.
The residents agreed to reduce the steroids and that she was making amazing progress (holding up her head, looking more alert and like Maddie). And after seeing her awake and responsive at rounds this morning, her doctor said that if we were comfortable and could get her to drink, we could take her home.
So the drinking part is going to be tough. She’s fighting liquids right now. But she did drink a little bit willingly once they stopped her maintenance IV fluids this morning, so I know it will come. But until she picks it up on her own, I’ll likely be forcing fluids by syringe. Better at home than at the hospital though. And so we are here.
The drive was tough; we could tell she was a bit nauseous. When we got home, she seemed relieved to be out of the car, but had no desire to play and just went right back to sleep. But we’re ok with that. We’ve seen her pattern now and she seems to want to sleep away a lot of the day only to get alert and awake just before her old bedtime. As long as she keeps progressing from day to day, that’s ok with us. She can have as much rest as she needs. And if our sleep schedule gets a bit off for awhile we’ll deal with it.
And in other important news, seizures are still dramatically reduced. We are so thrilled to see this. In the past, steroids have helped to reduce her seizures. And since she’s been on them at pretty decent doses since the surgery, we are a little afraid that they are playing a part in the great seizure control. We will have weaned her off of them by Sunday though. And so we’ll be watching carefully to see if things deteriorate as she comes off them. We certainly hope and pray that is not the case.
We have not seen a single one of her biggest tonic seizures since the surgery. She was having 3-4 a day before it. That alone is amazing. We would be so blessed and thankful if this surgery got rid of those scary and dangerous seizures for good. Even a break of a few days from them feels like a huge win.
Thanks again for all your prayers, positive thoughts, and support during this crazy week. I’ll continue to update as things change here. I also have some pics to post when I get more time.
Love to everyone,
Liz, Brandon, and Maddie