Todd was admitted under a certain program essentially to monitor his responses to the environment. If he progressed during the initial 2 weeks he would be able to stay longer. Unfortunately (& I say this with mixed emotion) he did not progress.
Yes, of course I want my child to get better. Perform better. Show everyone what he's capable of. But, that's just not happening here. He shuts down in therapy. Pretends to sleep through it. The second we leave the room he wakes back up. It's frustrating. He does a lot more than what they can document because he simply won't do it for them. He responds much better to me, to Brian, to his family. Not to mention, once we get home we'll have a better medication schedule. I've fought a hard fight to even get the medications where they are now, but it's still not perfect. Once I can manage his medications and make sure he gets them exactly when appropriate I think he'll do much better. Plus, I think just being at home, in his own environment will help. He's just not benefiting from being here, even though a lot of kids do, I think right now is just not the right time for him. At least not until we get rid of a lot more medications.
I absolutely love all of our therapists. They have all been amazing and wonderful and I've learned so much from them. Although I don't look fondly on this experience, I definitely will remember them and what I learned.
We will continue therapy on an outpatient basis and I will also work with him at home. Although I am not looking forward to getting up in the middle of the night to administer medications, it is worth it. I'll hopefully being going back to work in the next few weeks. This is when we start reshaping our lives, our routines, defining our new normals. It's not going to be easy, but I know we are all ready to be back together as a family in our own home.
It will be much easier, however, to take care of myself from home. When we were in the ICU, Todd was so closely monitored that I could leave him unattended at times to run home, take a shower, pay a bill, meet a friend for lunch. But, there is no monitoring here. They aren't on any vital monitoring except the 3 times a day they check it. If I were to leave him it would be like leaving him home alone to run to the store. That's just not acceptable. I have all my own stuff at home. My towels. My body care. My clothes. I've lived out of a suitcase for almost 3 months now. I'll be able to go back to the gym. I definitely need that. To be able to carry this 50lb child. I'm going to need to be in better shape to protect my back and other muscles.
Anyway... bittersweet circumstances. But, I think more sweet than bitter.
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