The Stroke Team

So. Today was sort of a bust from the cardiology front. We heard nothing from the transplant team, although Dr. Dipchand did come by to try and see us. But Ford had been taken to IGT (the SickKids equivalent of Children's umbrella dept. "Radiology") at the time to have his picc line replaced and we'd stepped out of the room for lunch.

Well, actually that's not quite true. Christa had stepped out of the room and I managed to finally stroll into the hospital (at 3pm), after sleeping 'till noon and lingering over a lazy breakfast finishing up Christmas cards.

We had an interesting follow-up from the doctor who replaced his picc line, who explained to us that Ford was really seriously "running out of access." His veins and arteries have been so severely beaten up since birth by what now must be a hundred different IVs, central lines, picc lines, art lines, catheters, etc, compounded by the tendency for his blood to clot, that his body is loosing the smooth, open lines that naturally develop. When an artery or vein is injured, either punctured and broken from a failed IV start or occluded by a clot, the body doesn't repair the existing pathway, instead it grows numerous tiny collateral connections that re-route the flow around the damage (I know we've brought this up before). So at this point, what should be a simple procedure of: Insert line to vein, thread line through vein into heart, doesn't work because the vein breaks down at various points into hundreds of tiny channels that are too small and fragile to handle the catheter. The doctor said she initially felt like it was going to be a bust, and then by some miracle managed to push it through. While we both breathed a sigh of relief, she was quick to add that she hopes this is the last picc line he needs, as the next time they might not get so lucky.

There are emergency alternatives, and he certainly wouldn't be completely out of options if he were to lose this line, but it makes his future in the hospital, at least from a IV therapy point of view, more than a little complicated.

Ford handled the whole event really well and by the time we got back in to see him he was alert and calm. Many people have already commented on the intensity of his gaze. It is really something to see, perhaps because the rest of his expressions are so restricted (arms tied to the bed, voice silenced by the intubation, etc), but the way that he watches people is really both amazing and unnerving. He just stares at them, like one of those creepy portraits that will follow you around the room with this unwavering, concentrated look.

We met with one of the doctors from "the stroke team" later on, who initially walked us through the same list of questions that the two neurologists we met earlier had done. At first it felt like a bit of an interrogation, as did the others before, like they were really fishing for information from us that we might be holding back. It was starting to get on my nerves until she took us over to a computer to walk us through Ford's old MRI and head CT scan. We never actually had much of a conversation with Neurology in Vancouver about what happened to Ford the morning of his stroke, we'd got the basic idea, but that was it. I guess Sick Kids is one of the biggest pediatric stroke centres in North America, and they have worked on a lot of babies. So this woman had lots to offer us.

It turns out that they were seeing things in the imaging that indicated Ford might have had several "silent strokes" since birth and they were anxious to know if there were any times when he had stopped breathing, lost the blood flow to his head, developed an extremely high temperature, or was treated for unexplained infection-like symptoms. She explained that it was very unusual for someone to have venous clotting, a hemorrhage, and an arterial stroke all at the same time (which is their analysis of what happened) and that what they were seeing might be the final result of several separate events that somehow went unnoticed until the seizures finally started. Watching her present the slide show of pictures of Ford's brain was dizzying. It was one of the few times I actually thought I might pass out. She walked us through each layer, pointing out what structures of the brain were visible and what was normal versus what wasn't, the animated flood of hemorrhaged blood and dead tissue that eventually took up the better part of his left hemisphere was horrifying. From the pictures, it looks as though the whole left side of his brain was obliterated and I think my chin just about hit the floor. She apologized after noticing the look on my face, for not having warned us about how bad it looked, and she concurred that it really was a lot of damage. But then she repeated what we'd been told all along, that kids show remarkable resilience to damage like this and that he would likely end up seeming almost normal. She then said that if the pictures we were looking at were from an 80 year old man "we'd be having a completely different conversation."

Before she left she volunteered an answer to the question that neither of us had the guts to ask: that they have never recommend a child be taken off a transplant wait list after suffering a stroke. Then cheerily said she was heading to Vancouver in 2 years to start a stroke team at Children's hospital, and that we'd be seeing her then for follow-ups. Mighty good news.

But wait, there's more. Ford was extubated this evening! He so far seems to be doing really well, fell asleep in Christa's arms for an hour and was settled nicely in bed by the time we left. We are both really scared, thinking about how things went last time and how quickly they turned for the worse, but my midnight check-in confirmed he was still sleeping soundly (without additional sedation). It is so great to see his face again, to have his hands untied, and to hear his hoarse cry.

We've got a 10am sit down with Dr. Dipchand planned for tomorrow, hopefully we get more news then.