I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Monday, November 7, 2016

A Long Overdue Update

I was really hoping the rest of our summer would be uneventful and I could post about some fun things we've done.  Hoping.  We went on vacation to Hatteras in August and day 1, Aaron would up getting really sick.  Like couldn't get out of bed sick.  The week after we got home, I wound up getting really sick.  Like couldn't get out of bed sick.  A week later Zach got really sick - diagnosis pneumonia.  A week after that - yep, Alex got sick.  

I started to write this post over two months ago.  I just haven't had a chance to blog with everything that's been going with Alex.  Honestly,even if I have had a minute and I've attempted to blog, I just haven't had it in me to rehash everything and wound up shutting the computer down.

So, to finally write it out, the very abridged version of the last few months is this:

Alex had over 60 seizures within a 12 hour period that landed her in the hospital for a week.  It was the first time I had to administer emergency meds at home and the first time Zach had to experience it as well, it wasn't pleasant. 

She was put on several anti-convulsants and sedatives to allow her brain to rest. 

On top of all of that, she wound up with pneumonia.

The 7th floor of the pediatric unit has an outside playground.  On day 4 her IV occluded (notice her swollen left hand) so she was disconnected for a few minutes and we tried to take advantage of the temporary "freedom" and took her outside for some sunshine and fresh air - but she wasn't feeling it.

Even a visit from her brother couldn't elicit a smile.

Despite all of the IV meds and interventions Alex was still seizing so at the end of the week she was transferred up to the Epilepsy Monitoring Unit.

Meds were changed around and her Onfi dosage was increased and the seizures seemed to settle.  On Day 6 we even got a half a smile!

We were finally discharged  and started weaning her off some of the heavy duty things she was getting in the hospital but things got progressively worse when we got home and we landed back in the ER a week later.  At this point Alex had completely stopped eating - it was like she forgot how to suck/swallow all over again and she was being fed strictly through her g-tube.  The day we went back to the ER she was writhing in pain, crying and moaning for hours.  She had no urine output for almost 16 hours despite being tube fed and receiving lots of fluids and it was obvious something was wrong.   Again, to make a really long story short, after LOTS of tests and blood work I had been doing a lot of research and asked if she could possibly be having withdrawal effects from one of  her seizure drugs, Onfi.  Ding, ding, ding...that SEEMS to be what the culprit was.  Alex had been like a zombie for weeks, totally out of it but not sleeping.  Even in the hospital they had given her IV doses of Versed and Valium and she still couldn't sleep because she was so uncomfortable.   It was so hard to see her so out of it and just blank.  

We've seen our fair share of specialists in the meantime and we're still searching for some answers.  A pulmonololgist happened to look at Alex's EEG's while she was in the EMU and he feels like some of Alex's convulsions were caused by her not breathing during periods she was trying to sleep which led to her hyperventilating and mirroring seizure activity.   Two weeks ago we went back into the hospital for a sleep study...I will say God was with us because Alex does NOT sleep when she's in the hospital and despite being there, and being hooked up to all of this "comfortable wiring", (especially the one in her nose - I was so uncomfortable for her just looking at it) she slept for almost the entire night.  

The results of this test should be in sometime this week and hopefully, just hopefully, we'll have some answers.

We've been weaning Alex off the Onfi for the last month and she finally had her last dose this past Friday night - while her seizures are increasing (we expected that and are getting ready to introduce a new medicine), we are seeing Alex and her personality reemerge and that's all I choose to focus on and be thankful for at the moment.