It’s been three weeks at DeVos Children’s and we are finally talking about home! We’ve been fully trach-trained and are finishing our “rooming-in” hours. Basically we give all the care with staff standing by. It was a good week for Calvin with his breathing. It was a rough week for his neuro-status.
Last week we noticed strange emotions, constant tremors, and extreme agitation with Calvin. Most of the time he was not aware who we were and no matter what we did he shook uncontrollably and had constant muscle tension. At first we were afraid he was “status” which means in a constant seizure and unable to stop it. After hooking him up to the EEG gear and loading him with IV anti-seizure meds it was decided it was not seizures.
Docs scratched their heads and we paced and worried. The only real conclusion we could come up with was drug withdrawal. I think it’s gotten better as the days have gone on but he is still tremoring and doesn’t seem totally himself. He is aware of me at times but often seems lost in his own discomfort. I think that because of his neurological deficits change is hard for him, especially when you totally revamp his airway! It could be some sensory issues coming into play. Hopefully it’ll settle down in the coming weeks.
We are hoping to go home sometime this week, the Lord willing. It looks like we are going to have some form of nursing care from this point on, not sure what that’s going to look like yet. We are trying to find some time to do a quick bathroom remodel on the main floor to make it more usable and nice for Calvin and caregivers.
I had lots of time to write when Calvin was sedated and on the vent, these days…not so much! Thanks to those of you who’ve blessed us with meals, it’s been a terrific help.