Thursday, January 17, 2008

Emerging from darkness, I dream in colour

No, it's not a clever reference to anything, just a phrase that popped in to my head. My first conscious thought when I awoke to my bus arriving at its last stop on the way to work this morning. So really, it's a genuine random thought.

But I've studied Freud, at least in passing, so lets pretend it wasn't "just a cigar".

Emerging from darkness
In light of the fact that I'm finally going home this weekend, Emerging from darkness could be a manifestation of my relief.

You see, after my last post, which was made the day after my son was born, life was good... for about 24 hours. And then things got ugly.. emergency room ugly. And now, 3 months later, I'm finally returning home.

Where I live, an in-home follow-up is done by local home-care nurses after a baby is born, it's a great service really. In our case, I believe it is why my son is alive today. You see, the nurse noticed unusual twitching, which my wife and I did not, as new parents, think was unusual. Apparently it was the rhythm of the twitch that concerned her. She suggested we go to the emergency room as soon as we could to have it looked at. We were on the road within about 30 seconds, panic already setting in. I don't even remember what time that was, but I think it was early afternoon, around 14:00 by the time we got to the hospital.

After some initial screening by the ER doctor, a pediatrician was called in. OK, so it's not a trivial problem, slightly concerning. Moved from triage to ER proper, tests, tests, and more tests. Then a C/T scan, slightly more worrying. Then we're told a transport with a team of specialists are on their way from BCCH (BC Chldren's Hospital). Hold on a sec, I think I skipped some details.. the key factor here was low blood sugar, and I mean ridiculously low. Way too low for a normal baby to have at 48 hours of age, even if it hadn't eaten that entire time. Somewhat troubling. OK, so we give him sugar and go home, right? I wish. Apparently it was low enough for long enough to cause some major problems. His blood had thickened to a near syrup state and there are a lot of other known complications. The C/T scan confirmed one of the worst of them, brain damage. I was "OK" up to that point, I think. Then some other stuff happened, but the emotions of the time seem to have caused a lot of details to be blocked from my memory. I do know that I drove us to the hospital, but that I wouldn't see my car again for quite a while after that. We were admitted to BCCH at about midnight, on the eve of Friday, October 26th, and my son was approaching his 4th day in this world. By this time he's receiving several medications by IV, which was originally used for a dextrose drip (sugar water).

Lots and lots of specialists. I don't remember all of their names, but I know that there were more doctors in more fields than I'd ever seen. The immediately re-did the scan of his brain, since he wasn't sedated the first time and had moved around. Confirmed that it wasn't a blood clot in his brain, but cerebral edema. That is, swelling of the brain. We're told our baby's life is in danger and a counselor is brought in. That was the worst night of my life.

As in life support. Ventilator, feeding tube, monitors for more things than I knew could be measured. At one point before going to the hospital that specializes in children, Arland had a full set of adult size cardio/respiratory monitors hooked up to him. If you want to know what that looked like, watch the Matrix and fast forward to the part where they show a baby hooked up.

Get some sleep
The next day we got to meet "the team". They go over everything they know (way too much detail to dump here). They tell us Arland is going to live. My son is going to live. Then something about disabilities and complications and blah blah blah.. my son is going to live. I remember being aware of the looks of confusion on the faces of the doctors. I suspect they aren't used to tears of joy as a response to being told that your child is going to have learning disabilities and have "special needs". Looking back, I suspect they either didn't know we were told he might die, or my wife and I are exceptional in that we discussed the possibility of a special needs child long before conceiving. Arland is now stable, the doctors know enough to know that he's not going to die. The worst night of my life is over. My son is going to live.

Intensive care, where each patient has a nurse stationed at their bed, 24/7. ICU is a depressing place. I'm sorry to say that during our stay there, a young teenage boy who was in a coma was unplugged. The ICU is not a happy place, but we were happy he was there and not the morgue. Arland is on a steady dextrose drip and 3 different anti-convulsives (for preventing seizures), but he's finally getting some breast milk, fed through a tube that goes in to his nose and down his throat. I think we were in ICU for 1 or 2 weeks. I' not sure. Time passes differently when you don't sleep at night.

Vacation time
By this point I've used up all my vacation time and sick time at work. And since I'm paying $45/night for accommodations at this point (so I can stay with my wife and son), I have to go back. It turns out, commuting from the hospital isn't very different from my normal commute. It's going the opposite direction, but it's still a short walk, a bus, then a short ride on the train. Just under an hour each way, instead of just over an hour each way like from home. I adapt.

Transitional care, a bit of a half-way point for long term hospital stays. There are 2-3 patients per nurse here, and the mood is much happier. These are patients who are either on their way home or on their way to one of the "normal" hospital rooms in one of the wards. In our case, it was a stop over while we waited for a bed to open up in the Neuroscience ward. By this point, Arland is down to monitors, blow-by oxygen (no breathing machine), and oral meds and vitamins, along with his mother's milk. He's still got the tube for all his feeding/meds, but he's not half machine any more.

Goodbye BCCH, hello relatives
We finish off the duration of our stay at the hospital in the neuroscience ward. Arrangements are made for a nurse to visit once a week to change the injection device in his leg and several months worth of blood tests and pediatrician appointments are booked. We're referred to various "programs" for children with "difficulties" and we move in with a relative so that we aren't alone if something comes up. We start to get back to "normal". Well, as normal as a new born can be at least. Other than not being able to let him go more than 3 hours without feeding (yes, I mean 24/7), and having to give him injections and oral meds every 12 hours, life is kind of normal.. ish.

More normal
Arland improves dramatically now that we're out of the hospital. Arland continues his pattern of ripping things out of his face.. oh right, forgot to mention, he pulled out his own breathing tube.. that is, he was the one that took himself off the respirator. And ripped out his feeding tube several times too, while in the hospital. Well that continued at "home" as we've grown to call it. Of course, instead of pushing a button and having a nurse rush in, we have to take him to the ER to get a new tube put in. Once was funny. Twice made us think this might be an ongoing problem. Three times.. the bloody thing was only put back in 12 hours ago! Four times!?! We'd already discussed with the doctor how long it needed to be in, and decided not to replace it.

Rapid recovery
As they say, babies change very quickly. Arland's improvement went in to high gear once he finally succeeded in ridding himself of tubes. Checkups and tests all come back normal. The fact that nobody has been able to figure out why all this happened sits and festers in the back of my mind to this day, but I prefer to focus on how well he's doing now.

I dream in colour
This was actually the revelation I had earlier this morning, when my alarm woke me up. I'd just had a vivid dream sequence where I remembered brilliant colours. It had something to do with contact lenses and taking them out letting me see colours for clearly. But I suspect it reflects on how happy I am to be a father. Arland is doing brilliantly now, by the way. He recently had his first check up with the visual impairment people and they tell us that his vision appears to be normal and that he may not qualify for the program.. oh darn, he's too normal for them. Appointments with the pediatrician confirm he's growing and developing normally. In fact, the only thing that isn't normal about him seems to be his strength, which is apparently slightly above average. Well that's not so bad, right? Well, maybe if you don't have hair for him to pull :-P

All in all, Arland is doing very well and with any luck, he'll be down to only one medication soon. Things should get more and more "normal" now, whatever that means.