mon petit chou

Finally got to meet with a Neurologist.

She confirmed the relative good news that while nothing had gotten any better, things hadn't gotten worse.

The treatment for his venous sinus thrombosis (brain vein clots), was downgraded from Heparin to Enoxaparin, which is easier on his system long-term, and poses a lower risk of starting new bleeds. The existing clots will take months to break down, if they do at all. She said that only 60-70% tend to fully dissolve and that if they don't the blood will form/find new ways to get out of his head. This happened with Ford's first clot (in his left femoral vein, back in Edmonton), where the blockage has remained but his body has grown multiple collateral connections around it to keep the blood supply moving. This has also happened throughout his chest, prompted by lower than normal oxygen saturation, where (according to his surgeon) a surprising number of collateral pathways had grown into his lungs with the hopes of boosting their blood supply. So from this point of view, Neurology is only interested in seeing Ford in about 3 months time (assuming the seizures don't come back) to do a repeat CT scan and see if there has been any progress in breaking things down.

We were, of course, mostly concerned with how damaging this has been for him and how much loss of function we should expect. Unfortunately it's pretty grey and she was reluctant to give us any definitive answers. But, similar to his circulatory system, if parts of the brain get damaged new pathways are developed. She emphasized the plasticity of infant brains, suggesting that his brain will likely prioritize its functions and make sure that things which are high-priority (like speech and language) get moved to less damaged areas, but that this comes at the price of loosing other abilities that would otherwise occupy those regions. And that, apparently, the brain does this of it's own accord and we are hopeless to predict what exactly will happen.

So comes the disparaging news. The area of this brain that was affected by the bleeding has been damaged, and it won't recover. So he has lost a certain amount of function and only time will tell what he can recover. Since the bleed was on the left side of his brain she suggested that speech and language were likely affected, but how badly and to what end, we don't know.

He's kicking both legs with more or less equal vigour, but his arm is still pretty dead. He will likely always suffer from impairment and weakness in his right limbs, and his arm will probably be worse off than the leg. He'll be getting assessed by a physiotherapist soon, who will determine what we can do to aid him in recovering what function he can, and since we were already on the fast track to getting Ford into several long-term, community-based therapy/development programs, this will likely just get lumped in with the rest of his treatments when we bring him home again.

There has been some disagreement (mostly between Christa and I) about whether what happened to Ford was 'technically' a stroke or not. We hadn't really got a clear answer until today, when the neurologist explained that it was 'technically' a venous stroke, which is mechanically different from the more common arterial strokes, but creates similar types of damage. Not that it really matters, in the end, this bickering over words. But it does make me feel like less of an alarmist when I go around telling people that my son had a stroke.

From the now seemingly insignificant respiratory front (remember when we were so desperately concerned with Ford's breathing and chronic lung collapse?), Ford was extubated to Bipap today, even though he hates it so much it turns him into a writhing, psychotic monkey (or maybe that was the stroke this time). His cry is pretty weak, almost inaudible, but that should hopefully recover over time. He's been hacking up wet, blood streaked phlegm all day, which makes us wonder whether he's come down with tuberculosis too (hey, at this point why not?), but is really just post-intubation irritation. Hopefully we will be back up on the ward by the weekend and if that all goes smoothly we might be home sooner rather than later. Neurology isn't interested in following him very closely anymore, they say it's up to the occupational and physiotherapists, as well as general pediatrics, to decide when he next gets the boot.