Wednesday, June 17, 2015

Shea's progress ( June 18th )

Today's "good things to report"

- foley cath was removed
- although groggy shea enjoyed some visitors
- pain is still present, but he is doing well on a pca pump and oral pain meds...continuous morphine has been dc'ed.
-no longer in need of iv hydration, but does still have iv for meds
-in am he was allowed to have a liquid diet and by dinner regular food
-vitals have been stable
- he was no longer on strict bed rest, but was allowed to return to wearing brace and sitting up, raising head of bed, getting into wheelchair etc.

The dreaded vertigo - many had hoped that the vertigo was somehow linked to the compression in the lower spine and once that was corrected the vertigo would disappear.  Unfortunately immediately when we raise the head of the bed or try to sit him up his world spinning, sweats, anxious, nauseous.  If you remember, they agreed that they wouldn't send him home until he could tolerate sitting for a reasonable amount of time.  Today my mother advocate job was to press the team to not just be content with a diagnosis of inner ear peripheral vertigo...because they never had a clinician with expertise diagnose him with that.  He has a symptom of vertigo...that doesn't automatically mean he has inner ear issues causing the vertigo.  College friend Julie W from Buffalo came to visit and I was thrilled that she was there when it was time to convince the doctors of this next step.  Julie just took vertigo treatment classes, and her jargon and observations helped strengthen our case.  After last week saying it wasn't needed... today they agreed to pull in a neurologist consult and an ENT consult.  ( last week neurosurgery was consulted but they only cleared his structural soundness of his shunt )

Both consults happened in the afternoon.  Both disciplines had immediate concerns during their assessment that warented further testing.  Wed night shea had a head CT for neuro and a head CT with contrast for ENT who suspects a possible vascular componant to the vertigo.

( with the help of google and the keywords  vertigo / vascular and symptoms I have made a mommy self diagnosis.... and am waiting to see tomorrow if i was even close.)  A mother of an ill child has a love / hate relationship with google... bunny trail.

"Fun adventure of the day" - Shea's mean arterial pressure was to be maintained at 65 or greater for the first 24 hours after surgery.( for best cord perfusion) By 4am his body couldn't manage this anymore while he was sleeping...however when he was awake it was meeting the mark.  Our choice was to let him continue to sleep as he had been for most of the post op course so far - but that would mean inserting an arterial line again and giving pressor drugs to raise his pressures.  Our second choice would be to wake him up at 4 am and keep him up till 9 am ...  so we chose the latter... and boy oh boy was that ever fun...

His legs - The right leg range of motion is the same, but he's firing the muscle more automatically and with less strain and effort.  His left leg/ quad ranges from no activity, to quad flickers, to very small jnt movements produced by the quad...

One time today I did have to fight a battle again to make my voice heard.  A plan had been made in the am in regards to one of shea's managements, with rounding doctors and mom. In the afternoon I stepped away to bring equipment from the van to his room and in that time - 1)the plan had changed by a team member who had not seen shea that day,2) something he needed was removed, and 3) a new intervention started that was causing him distress, and pain.  It took expressing my frustration, in a quite vocal manner and going above a head or two... but we got back on track with our original plan.

New "toys" for shea's future- I've started the process of ordering a wheeled stander for shea from monroe wheel chair, so that once we have symptoms resolved he can have a way to be mobile and vertical.

That's about all for today... we'll see what tomorrow holds... answers for the vertigo i hope and pray...

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