We sat down with Ethan’s rehab doctor today (well, I sat, Shane called in) to go over some diagnostic differences we’ve noticed and to get a bit more clarity on things.
Ethan, specifically he has Acute Necrotizing Encephalopathy (ANE). It’s diagnosed based on where it affects the brain and a bunch of other stuff that hasn’t really sunk in yet. With ANE the part of the brain that tells the body what it WANTS TO do can stay intact, which is why mentally he’s very alert, but the part of the brain that takes those signals and then passes them on, telling each body part what it needs to do, is injured. That cross path is affected. Basically? From what I remember. There will need to be some new reading that needs to be done, the right terminology will need to be learned.
Another thing with ANE is that there can be a genetic mutation present that can cause relapse if he were to get Influenza B. So that testing needs to be done and if he has it, any flu-like symptoms will need to be treated much more aggressively to do our best regarding preventing a relapse. But, we don’t have those results yet, which is almost scarier than having a definitive yes because now we’re walking on eggshells.
ANE is rare. It can be really aggressive. It hit him hard, but fortunately, the treatment made a big difference. He’s young, his brain can rewire if needed. The hope is that he will recover as much as possible, the possibility for longer-lasting damage is there. Time will tell. His recovery path will be lengthy but the hope is slow progress as time goes on. Fast would be awesome but slow is more realistic. We all want our children to be unique. Until that uniqueness puts them in danger. You don’t want a kind of unique that baffles doctors and set them apart from how Ethan has been. However, he is still SO loved and we will continue fighting with and for him every single day.
Ethan’s GJ tube was accidentally pulled out today, which meant a trip to SickKids to get a new one placed. Because it needs to be done with Guided Imaging, we cannot do it ourselves. The doctor said it was a difficult placement, but he was able to place a new tube and it’s working perfectly. All afternoon therapies and swimming were cancelled, which was a bummer, but the boy needs to eat 😉
Ethan had a rough day. His heart rate was sitting 150’s/160’s for most of the day and he was vomiting bile. He was otherwise fine. No fever, active, smiley and showing no signs of pain (Altho we’re trying to remember that his pain sensors may not be working great right now – which makes things rather tricky).
We did the cardiac work up here, called cardiology and are monitoring for now. His numbers and vomiting have stabilized before bedtime so hopefully, it will be a quiet night. He sees cardiology next Wednesday for his big check-up.
Snuggling with his flyin’ lion.
We got to come home for the weekend. It’s a 3 day weekend so the drive and packing everything up was more worth it.
Goodness. This kid has a lot of equipment and the amount of work that goes into a small trip (cause home really should not be considered a big trip) is unreal. His stroller takes up our whole trunk. Like to the point where if it sounds like he’ll be in it for a while after discharge, we’ll need to upgrade our vehicle to get more trunk space. The only reason I could get all his stuff with me now is because Timothy’s car seat wasn’t in the back. Not sure how we’d manage a family trip 😬 Being home actually isn’t easy. The memories of how things used to be come flooding back. The “what if’s” hit hard.
He looks so well. Honestly, if you’d just see a photo of him you’d never guess the battles he fights on a daily basis.