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Captain’s Log: Colleen’s AVM Adventures Day 12

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Tuesday 12/27/2016 4:30PM

I thought today would have been more difficult… after last night!  For some reason, Mom was super duper snarky last night… She ripped her feeding tube out twice and was going for the drain in her head so… back to the pillow-like boxing mitts!  They are — no joke — called PILLOW PAWS and poor thing, they’re hot and uncomfortable.  But they keep her safe!  She doesn’t remember a THING from last night… so if you run into her on the street later, best not mention it.

So the surgeons, intensive care doctors, rehabilitation specialists, occupational and speech therapists have been coming through the room almost constantly for the last two days to take stock of where we are and to try to figure out how to get to where we are going.

To talk about where we’re going, maybe we should first mention how we got here:  This kind of stroke — a hemorrhagic stroke caused by subarachnoid hemorrhage, coupled with cerebral aneurysms — was all caused by an AV malformation or AV fistula: A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain.

The arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process. (Essentially, a high pressure system and a low pressure system are directly colliding without any filtration in mom’s head.)

Brain AVMs are rare and affect less than 1 percent of the population. The cause of AVMs is not clear. Most people are born with them, but they can occasionally form later in life. They are rarely passed down among families genetically.  An AVM can be treated… in Mom’s case it requires more surgery, for which she has to first recover from the events of this initial collision/burst.

That will involve the rest of this week in ICU then a move to the in-patient rehabilitation hospital here for a few weeks… then we’ll talk that second surgery.

The thing about this kind of brain injury is that while it’s far more likely to make a full recovery, it’s a really SLOW recovery.  Like… months.  A year.  Even 18 months.  And the frustration and impatience can sometimes be your biggest enemies…

Good news: Mom is moving all four limbs and her neck and head.  The movements are slow and wobbly yet, but she has full command of her system.

Still too early: to make a call on fine motor skills… or to eat by herself.  The feeding tube will probably remain in until at least Friday.

Way too early: to say when she’ll be able to manage on her own.  Months away.

So, back in reality, we’re with the speech therapist and surgeon today… because when she speaks we noticed that her eyes are never open.  She has to close her eyes to talk and when she opens her eyes mid-sentence, she stops talking.  Talking is on a major upswing, but she NEVER wants to open her eyes.  And the efforts of opening her eyes exhaust her faster than anything else.  We’ve got a schedule worked out for “challenging” her brain to do more so that she can have more endurance for these activities… I read a Nora Roberts novel to her for several hours today and she stayed with me, but wouldn’t open her eyes for those several hours.

After 3 chapters (across many interruptions) I stopped for a drink and we talked for a bit, her eyes still closed.  It was a nice quiet chat about nothing in particular.  Then her drowsiness kicked into overdrive and she started drifting into mega-la-la-land… “We need to let Richard know about the California camp-mobiles… the bathrooms, the bathrooms in the camp-mobiles… they’re broken… and the roof…”

Oh. my. geese.  Her father would be so proud of the ridiculousness of these ramblings!!! I can feel the presence of his leprechaun Paddy with us even now…

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