Good news is that Hannah’s choreathetoid movements are now finally starting to show signs of lessening. This gives us hope that these neurologic movements are only temporary, most likely drug induced.
Bad news is that now we are starting to wean the final sedatives (pentobarb, methadone, and ativan), the withdrawal is really starting to take its toll on Hannah’s body. With the exception of two 30-minute naps, Hannah was awake, thrashing, and completely inconsolable for 36 hours straight! It was exhausting and horrible to watch. Even our night nurses were trying to do everything they could to help coerce her to sleep. Daddy and I ended up taking naps at the hotel across the sleep on shifts just so we could each get some sleep (uninterrupted by alarms, monitors, and people) just because Hannah needs one of us at her bedside at all times.
And the irony of this is that she can’t get a sedative to put her to sleep because that is the problem that got us here in the first place! We are no longer dealing with the adenovirus or pneumonia at this point, it is just the dang polypharmacy that was required to keep her sedated during intubation.
That is the reason I didn’t post an update last night. By the time I left the hospital at 9:30 pm and walked to our hotel room, I think I stayed awake for an entire 10 minutes of television before I crashed. Then, I got up at 4:30 am to come back to the hospital to relieve Daddy so he can go back to the hospital and get some sleep.
I was able to get her to sleep for about 20 minutes yesterday, about 30 minutes after her pentobarb and methadone, and she became truly apneic (forgot to breathe) for more than 30 seconds until the nurse came in and we aroused her. Of course, I was fearing that she has now developed sleep apnea (a symptom of Gaucher’s), but the fellow on her case is not convinced and wants us to “wait it out” because it could likely have to do with the sedatives she had just gotten.
HOWEVER…there is good news….
Hannah stayed on her HME (little humidifier on her trach) and off the vent for over 12 hours yesterday, and she did great. This means that she can handle being on room air, and she does not have to be on a vent during the day.
This morning, I came in at 4:30 am to relieve Daddy, and Hannah finally got some sleep! She finally crashed at around 10 pm last night and slept until 2:15 am. Then, thanks to a suggestion we received, we asked the docs to give her good old-fashioned benadryl. They gave it to her around 2:30 am, and she went right back to sleep! Even though she has had some moments of restless wakeup and dozing, she has technically been asleep for about 7 hours (off and on!) Even better, she did it overnight, which will help her day-night cycle get into rhythm.
So yes, the old family favorite, Benadryl, did what the other tons of sedatives could not do. Got Hannah to sleep. And yes, there is an order for Benadryl every night now if needed.
Hannah’s resident is here to do an evaluation. Good thing is she is starting to wake up now, at 6 am.