Friday, April 29, 2016

Hospital Ups and Downs

Over spring break Pip went down with strep throat.  Because of his probable mitochondrial disease he had extreme feeding intolerance and became dehydrated, hypoglycemic, and had wacky electrolytes.  He earned himself three full days in the hospital.

That episode really threw us for a loop.  After all, this was strep throat.  It's miserable, but it's a common childhood illness that's very treatable.  I asked both the doctor and nurses how often they get kids in the hospital with it.  I kept hearing "almost never."  When Pip is healthy we can almost forget he has anything going on.  Almost.  The feeding tube and leg braces make it a bit hard, but you get the idea.  He does really well.  This brought all sorts of fears racing through my Mommy mind.  Most of all, it made the fact that there is, in fact, something going on with his little body very real.

A few weeks after that we loaded up the car and trekked to Seattle to see Pip's mito specialist and have a repeat MRI and muscle biopsy done.  I asked if what we experienced with strep throat is something that may simply be an issue for Pip with "typical" childhood illnesses, and he said that yes, it might be.  Not what we wanted to hear, but something we need to be prepared for. 

We had a day to spend at the Pacific Science Center before our appointments and tests, which was so much fun!

We had a full day of appointments and learned that Seattle Children's has an anesthesiologist who specializes in mitochondrial diseases.  Pip's been under a few times, and he's never woken up so well.

Resting between appointments

Riding around between appointments at Seattle Childrens

Waiting to be called back for his MRI and muscle biopsy

In good news, Pip's MRI appears to be normal this time around!  If you'll recall, last year his brain MRI showed white matter damage of unkown molecular origin.  Basically, they were checking to see whether what was going on was degenerative.  But his brain actually myelinated!  We're so, so thankful!  Apparently this can happen with mitochondrial diseases.  His MRS also showed a tiny lactate spike.  We're still waiting to hear what, exactly, that means.  We have to wait another few weeks to hear about the muscle biopsy.

So, much uncertainty yet, but also much to be thankful for.

1 comment:

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