Wednesday, January 14, 2015

Wheelchairs, MRIs, and Panic, OH MY!

Look who is feeling good and back to his normal amount of time in his high chair! :)

He's been splint-free and feeling fine.  He's back to wiggling, stretching, reaching, and playing.

Today we have a big appointment- we're headed to the Mobility Clinic at DuPont to check out wheelchairs. (AHHHHH!)  I am hoping Isaiah's good mood continues and that he is up to try out a few chairs.  This is a whole new world.  I've been talking with and asking quite a few OI moms all about wheelchairs...trying to be prepared for the [likely] overload of information we're about to receive from the vendors.  I'm most excited about a specific chair, called a Panthera Micro, the vendor was brought in specifically for us.  It's made in Sweden and is the lightest weight pediatric chair on the market.  The lighter the chair = less weight for Isaiah to have to push.

Tomorrow is Isaiah's first MRI.  I'm nervous.  He may have to be intubated again (from what I understand, that's standard procedure for certain types/lengths of sedation.  He was intubated when he was 6 months old when he had his first surgery).  I'm nervous about the process of intubation.  I'm nervous for the MRI itself.  What if he has hydrocephalus?  What if he doesn't?  What if they discover something else?

I'm a maniac, aren't I? Such a worry wart....

The positive is that we should find out the results tomorrow.  Isaiah's neurosurgeon has surgeries scheduled, but will come to meet us when the MRI is done (in between surgeries) to go over it and come up with a plan if needed.

Crazily, I've gone back and forth on actually wanting Isaiah to be diagnosed with hydrocephalus (cough cough MANIAC cough cough).

 Hydrocephalus is a build up of fluid inside the skull.  If it's left untreated, it can lead to quite a bit of pain from the pressure on the brain.  A common way to alleviate it is for a doctor to surgically place a shunt in the skull that drains the fluid.

In my mind, I feel like if he has it and he has a shunt put in, Isaiah's head will stop growing so rapidly.  His head size is what is limiting him.  It's why he isn't consistently sitting up or holding his head up.  His head is heavy.

But then I found out that hydrocephalus is almost always a lifelong condition....and that makes me want to puke.  I  had been thinking "oh good, he'll get a shunt and that will be that."  Nope.  The shunts only work for so many years before needing replaced.

So now I am not sure what to think.  I don't want Isaiah to go through multiple brain surgeries.  Would it be considered "brian surgery?"  I assume so since he'll be seeing a NEUROsurgeon... 

Hey Vicky, stop panicking over unknowns!

Ok, I started, we'll update you when we can.  For now, I need to put my focus back on wheelchairs.  :)

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