Yesterday was a nightmare. Today was even more of a nightmare.
Yesterday’s facebook update (because I don’t feel like rehashing right now)
Having a fantastically crappy day — Hannah is a mess now that she is trying to be weaned off her meds to the point where after 5+ hours of thrashing around and finally crying, we had to give her another heavy dose of sedation meds to knock her out so she could get some sleep. Catch-22 from hell.
Early this morning’s facebook update: Just had a one-on-one with Hannah’s attending for the first time ever. Unfortunately, there is no better way to wean Hannah off than to “just do it.” After yesterday, not the answer I want to hear. How ironic is it that we are no longer dealing with the virus and the pneumonia is gone — the things she originally was hospitalized for?
Today’s nurse was awesome (as most of them have been). We had never had her before, and I think that may have been a saving grace today. After talking about it with another nurse who has had Hannah before, neither of them believe that was she is doing, the constant jerking/flailing/agitatedness for many, many hours on end, uncontrollably, was not completely withdrawals but could be neuro related.
After discussing all the withdrawal symptoms with the two nurses, Hannah only has a couple of them. The flailing/jerking motions, but hers are completely full body from her head to her feet and everything in between, including her eyes. Also, her pupils are slightly dilated whereas most withdrawal patients have really dilated pupils. Hannah does not sweat profusely nor does she have loose stools.
After talking about this, they called the resident who came to talk to me, and I asked them to consult Neurology. They were down within an hour, but they had ordered an EEG in the meantime. While she was flailing and jerking around, they did an EEG on her, just to rule out seizures (which they did, thank goodness). When the neuro attending and fellow came around (same fellow I had met when we first got into the PICU for seizures), they both said that it did not look like withdrawal to them either.
They believe Hannah has developed a “movement disorder.” Of course, my first thought when I heard that was Hannah’s dear friend, Bertrand .
They explained to me that her movements are of a chorea type . Whether this was brought on by her seizures (doubtful), the sedatives she has been given (likely), or her Gaucher’s disease (also likely), is unclear right now. However, it is incredibly important to figure this out because if it is not drug-induced, we are in deep trouble, as it may likely be able to be controlled, not for certain. I cannot imagine Hannah living with this condition, it is just outright cruel.
The attending neuro and Dr. Schiffmann talked via phone later in the afternoon. I don’t know what was said, but hopefully Dr. Schiffmann was able to give him some insight into the neurologic part of this disease and how if could play into this movement disorder, if indeed this is the case.
What is worse, it could be a combination of this movement disorder and her withdrawal, so we still have to wean her off the sedatives. But the only time she gets a break from this constant jerky movement is when we can sedate her.
Hannah is so exhausted. In the past few days, the only sleep she has gotten from this horrible condition is when they load her up on sedatives. Even then, she only gets between 30 to 90 minutes of sleep. She is averaging maybe 6 or 7 hours of sleep a day now, and it is not a comfortable sleep as well.
I am pissed off about this whole situation. My heart really hurts for Hannah. I sit there with her, at least 10 to 14 hours a day now, just holding her hand and trying to let her know I am there while she is constantly jerking around. There is nothing I can do to help her except try and hold her arms and legs down so they don’t go flailing all over the place. At least when she is mommy-swaddled or pillow-swaddled, we are conserving some of her energy — even though her body still tries to throw her muscles all around, we can keep them from doing it.
The downside is that she develops a fever every time she gets more riled up, to the point of 102.4 today. Then of course, the doctors want to do cultures AGAIN, to see if there is an infection in the line, which there isn’t.
Hannah needs a break. She needs to be able to start feeling better. She needs a chance to recover.
I just feel like it keeps getting worse and worse for her, and there is nothing I can do to stop it.