“Amazing!”

That was the term Hannah’s neurologist used when saw what a change Hannah has had in her neurologic issues, chorea movements, and physical demeanor in the two weeks since we had seen her.   We had thought she had improved quite a bit in the past couple of weeks, but hearing a medical professional, especially one who is following her for her neurologic issues (especially the chorea movements), put the biggest grin on my face for the rest of the day.

So the plan with Hannah from the neuro standpoint now is to start weaning off the Keppra.  Since no one believes she has a seizure disorder (since she only had one at the beginning because of hypoxia due to a breath holding spell), it is time to try and get her off her seizure med.  Also, since Keppra is a third-line of a defense drug for chorea movements, this will give us a chance to see if her chorea movements continue to improve.  We should be off that in 4 weeks.

She will remain on her Klonopin and haloperidol for now, both 3 times a day, for her movement disorder.   She also wants us to use melatonin with Hannah to try and keep her sleeping through the night.  She shared that kids who spend a lot of time in the PICU lose their normal sleep cycle, and this is likely the reason why Hannah does not do well through the night.  Admittedly, she is doing better through the night — anywhere from 5 to 7 hours of sleep now, which is so much better than the 2 to 3 hours of sleep a couple of weeks ago (ironically while she was on the sedatives!).

She also made the comment “When is she getting the trach out?   She doesn’t seem to need it.”   I loved hearing that.  After talking to Hannah’s nurse, most kids on trachs have a distinct type of breathing sound and pattern.  Hannah breathes through the trach, but she also breathes through her nose and mouth.  When she pulled out her trach, she was breathing fine — I only noticed because I heard her breath sounding a bit different, but not labored.  So I am keeping my fingers crossed that taking out her trach (that was only put in because she could not be extubated because of oversedation and polypharmacy) in a few months or so!

I’m so proud of my little Hannah.  Everyone seems to be amazed with her.   I know I am.