It's been a roller coaster of a few days. Conor's surgery seemed to have gone well -- even though he had a
bad reaction to the anesthesia -- and thus was wide awake for the
procedure (including them sawing through his skull) -- he seemed to be
bright and sharp and even (wearily) smiling. That quickly changed to much
pain on Saturday through Monday. On Tuesday he began to come out of that
-- as we were able to get some control of his pain. Monday was a
particularly hard day as a couple of the therapists suggested to us that
when we leave the hospital we send Conor to a rehab center (in-patient).
While we are not opposed to that philosophically (at least not for sure)
-- it seemed to quick a step and one that was being made by people who
were offering quick assessments without a complete picture.
Today started well...even though his language had not improved enough for
him to go home --it sure looked headed in that direction (we felt we had
hit bottom with his language on Tuesday when he couldn't locate the sounds
for his name). This morning he could say his name and answer a few other
questions well. The physical therapist came to work out with him and he
did great. Close to the end, we stood in the room and he and I threw a
round medium sized rubber ball back and forth. It reminded me of the time he started playing t-ball and our tossing of a small ball back and forth in the backyard.
His last exercise was one on balance. He stood on one foot for 30 seconds and then on the other one
for a minute. But then time froze. Or more correctly Conor did. It was
clear he was having a seizure and he was locked up. After about a minute
we were able to "un-freeze" him and sit him down in a chair just as the
speech therapist walked in (who I thought was particularly quick to offer
an assessment without much knowledge the day before). I should have asked
her to come back an hour later, after what Conor was just experiencing.
But I didn't. She sat down and began to do some speech work with him and
it was a lot worse than the day before. Conor worked hard, but you could
see the frustration.
I ran home to take a shower (I've been spending the night here). I got
back around 1. Around 2:00 he started to have more seizures -- these with
much more shaking. He had five in an hour. They ordered some stronger
anti-seizure meds. He had a few more, but much lighter. But then late
tonight - he began to have them again. Starting around 8 o'clock and
continuing until after 11:00. More and stronger anti-seizure meds were
ordered. Kathy and I would hold him. Try to offer him words of comfort
that we are not even sure he can hear. When he is done we remind him that
the doctor had told him and us that these things would probably happen.
You can see the fear in his eyes as he realizes what he is going through
(and the lack of language that always comes in its wake).
In the long term we are able to see this as a blip. But that isn't where
we are living right now. It is scary and painful and an all too real
illustration of our complete powerlessness in this instance (and in life,
for that matter). Many have surrounded us with their presence, prayers, and good wishes. We are grateful for them all.