Days after I made my previous post, the rehab hospital extended my son’s stay, to the 20th of February. We were … not overjoyed, but aware that Physio is necessary for the foreseeable future. When we’d been given the discharge date of 29th January, we were told that this was immutable, that there were OHIP rules, etc. etc. That they couldn’t extend. He wasn’t walking at that point — and still isn’t — and that meant we would need to figure out how to get him into the house.
(Our house is an old semi-detached that was built at the turn of the century — the last one. 1900s. It has a tiny, city lawn. This means that we can’t build a ramp from the sidewalk to the top of the front porch because the incline would be too steep. We can’t build a graduated, snaking ramp because the lawn is too narrow and we’d be straddling the neighbor’s lawns. The porch has steps. Those steps need to be climbed in order for my son to get into the house.
And we have stairs to the second floor, where the bedrooms are.)
An extra three weeks of physio involved stair practice, because they knew that he would have to climb 4 or 5 stairs to get into the house. He practiced walking as well, and he had gained there — but not enough that the PT was willing to let him try to walk independently; she wanted herself and one other therapist to spot. And in her ideal universe, there would be no stairs either inside or outside the house — which, sadly, is impossible.
My son came home on the 20th of February. He insisted that he was going to climb the stairs, and the PT had taught us how to spot him so he could — if he had the strength — do so safely. But he didn’t feel at home until he was wheeled into his own bedroom, and was lying down in his own bed. Everything else followed.
But the first surgery required the removal of part of his skull — they call it the right bone flap — to allow the swelling of the brain room to expand. Bleeds in the brain cause swelling. If the bleed is close to the skull, the surgeons can remove the blood — it’s the blood that causes the problem with the swelling. My son’s bleed was in the middle of the right side of the brain — they couldn’t operate to remove any of it without causing more damage. Which meant the brain would swell — and if the swelling was crushed against the skull, damage would result from that.
So the skull on the right side was removed to allow the brain room to expand. Which it did. But surgery to put it back would be necessary. That happened on the 12th of March (we had about 36 hours notice). He was admitted to the hospital, surgery was done to place the skull piece — which had been preserved — back. Surgery seemed to go well, and he was discharged. But he had a fever on discharge, and when it did not respond to Tylenol or other methods of trying to bring it down he returned to the hospital.
On this second visit they did every test known to man, I think to determine that the skull flap hadn’t introduced bacteria or infection — because if it had, they’d have to remove it immediately. But the various many tests implied that this wasn’t the case, and the fever did come down in the hospital (I have a suspicion it was in part dehydration, and in the hospital he was on an IV saline drip).
He was discharged again yesterday. This time, there was no fever. He is far more awake than he was when we first brought him home after the surgery, but he seems to have suffered no damage beyond being in bed for almost a week =/.
I did not get writing done in February, as I’d hoped when contemplating a discharge date of the 29th of January. But there is no further surgery in the future for my son, which means… he gets to stay at home. We get to keep him at home. And maybe I can finally breathe >.<
My current plan is to once again reformulate normal home life and give myself enough mental space — i.e. space that is not entirely focused on my youngest — that I can finally write new words.
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Take your time and good luck with your son. Hope he gets well soon.