Results and a Plan

Monday night's video EEG went well, and luckily Audra slept all night long so they were able to capture plenty of data.

Tuesday morning started early when they came in at 6am to stop the pedialyte that was running through her G-tube and place an IV in preparation for her spinal tap.  Thankfully they were able to get her bloodwork drawn with the same poke as her IV so that was like a 2 for 1 deal.

I am so thankful to be here this week when Audra's primary neurologist is on service.  She knows Audra well, understands the whole back story and really empathizes with the struggle that the past few months have been.  She is determined to help Audra. 

During rounds yesterday morning she informed the whole medical team that this would not be a quick "in and out" admission.  And that no stone should be left unturned during this admission.  Audra is complex and unique and she cautioned them not to get lost in her long list of diagnoses because it's easy to blame things on any one of her many diagnoses.  It's been a long road with Audra but she deserves a complete, thorough, extensive work up.  What a relief it was to hear those words. 

The final read on Audra's video EEG came back and the verdict was that the Depakote did in fact "quiet down" her abnormal EEG.  So they probably won't make any changes in her Depakote dosing any time soon. 

Most of the day was spent waiting for the main event...her spinal tap. 

And while I was both anxious and eager at the same time...
Audra was just....
Sleepy !

About mid-afternoon we finally headed down to the pre-op holding area,

and waited some more!

So we passed the time taking selfies:

 

While Audra was in the OR for her quick procedure I grabbed my first meal of the day from the waiting room vending machines.  

I was so hungry I would have thought just about anything was a gourmet meal :)

 

It is always nearly impossible to sneak away to grab a bite to eat when you have a little one who is NPO for anesthesia.  Not to mention the guilt I would feel with a full belly while hers was aching for food.

 

Everything went well with the spinal tap and she was back in her room quickly.  She slept for a bit then woke up cranky and irritable.  We gave her some Tylenol in case she had a headache and after a little more sleep she woke up in a better mood.  The techs came in to remove her head wrap and EEG leads, then she feasted on snacks from the unit's pantry.

It had been a long day so we both fell asleep easily much earlier than usual.  Then at 10pm the hospital phone in our room rang.  In a bit of a daze I answered it and it was Audra's neurologist.  She was calling to let me know that the preliminary results from Audra's spinal tap showed an increased number of white blood cells, which indicates inflammation.  And as crazy as it sounds...we both were relieved.  This is the first tangible piece of information we have had in the past 6 months to say that YES something is wrong with Audra...something medical is triggering these terrible behavior changes and her developmental regression.  So with that new information the plan was to start treating Audra for autoimmune encephalitis now.  The antibody testing of her spinal fluid that was sent to the Mayo Clinic will take 2 weeks for results. 

With all that new information swirling in my head it took a while for me to fall back to sleep.  Then Audra woke up from 2-5am.  She was happy and content just watching her iPad.  She managed to get a little more sleep between 5 and 7am, but then woke up vomiting.  So into the bathtub she went which meant I could scrub all the yucky EEG glue and junk out of her hair. 

Yesterday she was too sleepy to notice the special delivery she got, but today she caught a glimpse of him right away...which isn't hard because he is soooo big...

Some bunny really does love Audra!

{Thanks Aunt Kristy}

 



This morning was a long and anxious wait for the doctors to round.  The plan is to start intravenous immunoglobulin tonight for a total of 5 days.  They will wait to see her response to that before starting high dose steroids.  The other medication that is typically used causes a significant immunosuppression particularly of the B-cells so the team would like to consult with the immunologists first to determine what this might mean for Audra with her underlying immunodeficiency. 

Audra had more bloodwork drawn this morning to get a baseline of some things before the treatment begins.  With a solid plan in place that wouldn't start until later tonight I was able to go 2 flights downstairs and put in about 6 hours of work while some of the same 1:1 observers who sat with Audra during her past two admissions came to sit with her today.