Hospitalization, day #3 PICU

“Stable” is the word of the day.   For the most part, Hannah has started to stabilize instead of getting so much worse in such a short amount of time.

We got a lot of answers today.  We know what we are dealing with.

She tested positive for the adenovirus.  It is a crappy virus that really hits even healthy kids really hard  So add that to Hannah’s already delicate situation, it was like a mac truck on her.   Unfortunately, like most viruses, there is no treatment.  She just has to ride it out.  That part sucks.

She still has pneumonia.  She is given two antibiotics for this, and she still is running a fever between 99.8 and 101.8 most likely because of it.

Seizures.  She is still on seizure medication.  However, her 24-hour continuous EEG showed normal activity, no seizures.  So that is a good sign.  At least, for now, the seizure meds are working OR she just is not having any more seizures.   The seizure situation is now taking a backseat to the virus and the pneumonia at this point.

She is still intubated.  Probably will be for at least a few more days in the best scenario.  Because children with Gaucher’s are so susceptible to significant laryngospasms with extubation, Dr Roy (Hannah’s ENT) and I really stressed that we do not want her extubated until they are really sure she is ready.  No let’s take out the tube and see how she does.  I would rather her be intubated for a few extra days than to have the tube taken out just to find she isn’t ready and needs to be reintubated.

She is doing well on the vent.  It is at 40% oxygen, and they were able to wean down the PEEP (pressure needed to open her lungs) down to the minimum of 5%.  That means this evening, her lungs were well enough to open up on their own and use the oxygen the vent was bringing in.  Before, she needed help getting her lungs to open up big enough to use the oxygen from the vent.  So THAT is a good sign.  There is talk about starting to bring down the amount of oxygen she needs from 40% to something like 30% or so tomorrow.

They started feedings today, thank goodness.  Poor girl has had no food outside of fluids in 4 days (she didn’t eat well the day before all this started).  She has a nasogastric tube (tube through her nose into her stomach) and they just started giving her Compleat Pediatric (what we use at home).  They are starting off very slowly just because her stomach has been so empty.  Hopefully, these calories will start giving her more energy to fight this virus.  Because she is hypermetabolic, she uses up many more calories than the average person for everything she does, including breathing.

The best news of all, is that an hour ago, she recognized my voice.  I started talking to her (just as I have done dozens of times today), and this time she opened her eyes really big, got really agitated, and started to tear.  It was exciting and heartbreaking at the same time.  I tried calming her down, putting my hand on her forehead, and she relaxed a bit.  As soon as I took my hand off and heard me talk again, she did the same thing.  The nurses ended up sedating her again because it is not good for her to do that.

But she recognized my voice, my touch.  That moment right there made my entire night.  It was the first time she recognized me in over 24 hours.  That has to be an improvement, right?   At least I will tell myself it is and be able to sleep with just a bit more hope tonight.