I won’t lie, I’m worried about the ramifications of this whole virus thing when it comes to Ethan’s recovery. There’s a good chance Ethan will come home to little or no local resources and support. Not because people don’t WANT to help, but because we simply cannot. Between Centres being closed and it simply not being safe for nursing to come into our home our options may be limited for a while.
It’s currently about trying to make the right calls. How much longer do they keep him here, while there is also more exposure to people – people who are very cautious but people nonetheless – vs sending him home to limited/no resources which will affect his recovery significantly. He’s in a very important window recovery wise and while we can do some work with him at home, it’s not the specialized care he really needs. It feels like a lose-lose situation to be honest.
They’re locking down hard here. No more weekend passes, only 1 caregiver per patient, screening for everyone upon entering etc. They’re doing their very best, and we know the staff are all very cautious as they know what’s at stake. He’s safe here, but safer at home of course. But gets essential therapies here, so for now we’re definitely staying and prolonging his admission is still being discussed, but I can’t help worry about that transition home. I doubt this whole thing will blow over soon.
We all want what’s best for him, and give him the best chance to regain as many skills as possible. While at the same time making sure he stays healthy.
This is hard and this added stressor is not making it any easier.
Some days his tone is worse than others. Some hours is worse than others. Sometimes he sleeps cozy, sometimes he gets himself all twisted up.
Overall, we’ve seen improvements in his tone. However with that tone decrease it’s shown the true strength of his core and it is now a bit “weaker”. It feels like a setback but we need to remember that the issue has always been there, it was just hiding behind the excessive tone. It’s all such a balance when it comes to meds too. They want to give him strong enough doses to settle his tone but not too much to make him too weak. So right now we still have higher tone, with slightly lower core strength. It’s confusing and feels like a mess, and I’m not sure how we will manage this balancing game once we’re back home.
On a positive note, we started trialing some G-Tube feeds today. Because he now has a button that has access to both his stomach and Intestine, we can easily try some feeds into his little tummy. So far he’s tolerating it beautifully. He’s still on continuous feeds, but once he tolerates this well we can try to speed up the rate. Getting him back to G-Tube feeds would be awesome. Especially because he’s constantly trying to grab at his button. With it being a G/GJ we can’t put it back in ourselves if he pulls it. A regular G-Tube we can.