Monthly Archives: July 2006

Post-operation post

Laura In Peter’s last post he mentions “The Room”. This is the OR waiting room. It’s a large, nicely-decorated room with comfortable chairs arranged in groups where the parents of kids getting operations at Sick Kids sit and wait and wait and wait. On regular weekdays the place has a very creepy vibe: over the day parents are in various states of arriving, staying and leaving, with the average level of tension in the room remaining about the same. Parents leave either after talking to the surgeon in the room (if surgery’s a success) or else going with the surgeon to one of several little antechambers off the main room (if surgery’s… as I said, creepy.) Today being Sunday there were no scheduled operations except for Jon, so we had the whole room to ourselves. The creepiness factor was therefore pretty minimal, though we radiated tension pretty well on our own. There is, apparently, another waiting room for the trauma ORs. I would not like to be there.

It was interesting to note that the surgeon, Dr. Unni Narayanan, and the anaesthesiologist were in disagreement over whether or not to use an epidural for pain control. The anaesthesiologist pointed out how an epidural is done by feel, and can miss, or be partial, or freeze just one leg–the wrong one. As legitimate as his concerns were, he came across as grumpy and that maybe he didn’t want to have to do the extra work, since it can take an hour to properly set an epidural. (It turns out, Jon’s took over an hour.) For better or for worse we sided with the surgeon.

Dr. Narayanan took out Jon’s old leg hardware
Jon's old hardware
and put in new ones, which I assume look somewhat like the old ones (without the bump), except they’re now in the correct place.

After about 4.5 hours in the OR Jon came out well (if justifiably cranky, especially at those traitor parents of his).
Jon post op

So, it turns out that Jon will NOT need a cast!! The new blade plate is apparently strong and securely-fastened enough that it will hold the fracture just fine on its own without a cast reinforcement. In the photo above Jon’s right leg is actually comfortably bent. He just cannot weight-bear for six weeks, but is free to swim after four weeks and take baths when his stitches heal. How we’re going to prevent Mr. I-Prefer-To-Stand-At-The-Computer from hopping off his chair I’m not sure. Ropes, perhaps.

Another thing getting fixed is Jon’s inability to completely straighten his legs. Jon’s hamstrings are pretty tight (due to his CP and his weed-like growth). Dr. Narayanan gave them botox injections to relax them. To help stretch those hammies we’ll be putting knee splints on Jon for a few weeks. So he might as well be in casts, but they’re not nearly as confining and awkward as the A-frame cast he was in five years ago. Whew!

At any rate, feel free to drop by 5A11—we’re here!

Limbo

PeterIt’s Saturday evening, and still no operation. Around noon, the nurses on our ward were talking in hushed tones–the ortho resident had been paged three times by Emergency that morning. Then once again in the afternoon (each page likely means a major emergency operation). In fact, the resident met with us in the evening and told us that in the late afternoon the team had just been assembled for Jon and the operating room cleaned and they were about to page us, and in rushed an emergency appendectomy and took their OR. Arg.

Tomorrow first thing, they say, unless there is something worse in the meantime.

The waiting is of course, very draining. Jon is in occasional pain. As of last evening just before bedtime, his broken leg is in a kind of semi-traction…four pounds of weight are pulling at the leg to straighten it. In turn, he turns on his powerful CP-powered inner muscles, so the leg kinda twists, but that doens’t bother the orthopaedic residents too much–it’s relatively straight, and he’s relatively comfortable.

Also, they switched from oral Tylenol + codeine to IV morphine (beign very strict with the no oral intake before surgery), so he’s fuzzy headed, but a little grumpier. Yesterday’s codeine bunged him up good, giving Jon one more mildly unpleasant reason to be grumpy.

For the record, I did put forward the suggestion that when morphine is prescribed, it should be prescribed in threes (for the parents, you see), and it was met with approval with the nurse, but I didn’t notice her putting it in the suggestion box.

The nurses on the floor tonight were considerate enough to order Jon a dinner, and then a new one when the “pizza” that showed up was…well, it might be considered pizza somewhere. Maybe Neptune. Good call, 5A nurses.

I think Laura and I are doing a little better than last time, probably because we know what to expect. This stage is maddening, and Jon’s not totally comfortable for too long, and always needs something. Must pace ourselves for the long haul. Maybe tomorrow…The Room.

Hospital story continues

Laura Short note; no operation yet. Since we were admitted via Emergency, we have reasonably high priority—unless higher priority emergency cases come in. Guess what came in! They are hoping to operate tomorrow, but we don’t know when.

The most aggravating thing about the waiting was that Jon had to be food- and water-deprived as of midnight last night in preparation for the operation, and so he had no food between 10 PM yesterday until 7 PM today! Poor guy—he behaved like a gentleman considering that his blood sugar must have been at rock bottom all today.

We’re in a new room now, hopefully for the rest of our stay: 5A11 (that’s Sick Kids, Reid).

Mornin’

PeterLaura reports that they moved to a room at 2 am. Jon is in 5C68. [ Jon’s been moved to 5A11 ]

Jon got an Advil around 6 pm, but nothing after. As he tried to sleep, the emergency pages over the loudspeaker–which begin with a loud ping, not unlike the airplane chime that started all this–were driving him bananas. Laura reports that by midnight he gave up on frustration and got really wide awake and giggly. Jon was given Tylenol with coedine at 2, and finally slept. Around 3 am, a page echoed around the upper hallways, and you could hear babies howling and heart machines pinging from all the young ‘uns it awoke, but Jon was way, way out! Poor guy is probably getting the first decent sleep in a week.

Laura only joined the caffeinated masses a few months ago, but it was a good thing she had that cappucino at 10 pm, because she was asked to provide a detailed history of what happened at the nurses station at 2:30 am.

Fracture

Comparative xrays reveal Jon's fracture

PeterIt was no muscle spasm. After a brief meeting with his doctor at Bloorview, we whisked Jon to Sick Kids’ Emergency, where X-rays have revealed a huge fracture.

Here’s the deal: remember his last operation? Well, the hardware they installed has drifted down as he grew, and the shock of that sudden leg bump has caused the blade plate, originally in the femoral neck, to fracture Jon’s femur.

They’ll be doing emergency surgery sometime tomorrow, and it sounds as if they are still deciding on the best option, given that he bears weight on it (some kids don’t, and I guess that changes the equation). We don’t know what we’re in for, except that it will be the rest of the summer convalescing. And that he’ll be in much discomfort.

Poor Jon. It must have been excrutiating, and here we were saying it should be improving.

How did Children’s in B.C. blow the diagnosis? Maybe the angle of the x-ray, maybe the fact that in some kids a fracture isn’t immediately apparent, maybe that they had nothing to compare it to. I don’t understand.

We’ll need to get a social network going. Please feel free to visit, ’cause we’ll be here!

Laura is in Emerg overnight with Jon, I returned the car home and will return in the morning. We’ll be in The Room tomorrow.

Late-breaking note: Why was Jon always pointing to his banged knee as the source of pain? Because hip pain often radiates to the knee! Now you know (well, now we know). Apparently this is common knowledge in medicine.

Our BC vacation

Okay, suddenly there’s trouble. We started putting together a big post celebrating our vacation, but I’ll post what we had written, and that will have to do for now… –P

LauraPeter We are back from a two-week vacation to Lotus Land. It was a lovely vacation, idyllic, even—until the twist ending.

Part the First: Vancouver
We landed in Vancouver July 3rd. The Vancouver portion of the trip was fairly low-key: Mainly seeing friends (hi Alayne, Leanne and Brenda!) and family.

B-Line Bus
The convenience of the very accessible B-Line buses

The gang at Granville Island, Bachan with Jon at the piano
At Granville Island, where we witnessed a The Birds-like attack of seagulls on a girl with a heaping plate of food; Bachan playing music with Jon

Playing with black dog Teagan
Playing ball with Teagan. Jon got quite used to saying goodnight to her, and being greeted in the morning…

Lees candies and in the forest
Visiting Valeria at Lee’s Candies, and a walk in Pacific Spirit Park

Jon on trampoline
On Tamo and Midori’s trampoline

Not pictured: Jon’s delight at the Seabus and disappointment that we only took it once (Eduardo drove us back from North Van);
Tamo getting his knickers in a serious knot from losing to Peter at crokinole;
Midori being absolutely great friends with Jon.

Spanish Banks
The view from Spanish Banks

Part the Second: The cabin
We opted to take a flight to Campbell River to forgoe the lengthy ferry-ride and drive up Vancouver Island. At the (miniscule) South Terminal at Vancouver airport we got caught by security for carrying in Jon’s backpack a—gasp—tiny wrench and allen key for Jon’s wheelchair!! Never mind the fact that we managed to get from Toronto to Vancouver with the same wrench and key in the same pocket without getting buzzed; I’m not sure exactly what they thought we were going to do with them—take apart the plane, maybe?

Thence followed five days of sheer loveliness better described in pictures:

Lying around
Lots of relaxin’: Laura with cuddlebug Teagan; Tara with Jon

Jon's first fish!
Jon’s first fish!

Jon's second fish, a dogfish shark
Jon second catch–really!–was this shark, a dogfish, which he reeled in with help from Daddy, who is holding it not for credit, but for scale. Note the dangerous spikes on the dorsal and adipose fins.

Jon's in boat cabin, fish teeth, eating shark
Jon enjoyed the boat. The fine, dangerous teeth of the dogfish. But not so dangerous as the teeth of Jon, which joined the teeth of 10 of us in eating two dogfish as fish and chips.

Peter and Laura's cods
Laura with a rockcod (yum yum); Peter with a lingcod (which had to be thrown back, alas, being under the required three-foot size)

Grandpa fishing
Grandpa fishing

Prawns
Prawn traps; prawns the size of young Shetland ponies

Moonsnails
Moonsnail “peeing”—actually just expelling water—as it squeezes itself back in its shell (lotsa laffs from Jon)

Wildlife
Tidal pool life galore!

Log herding
Logs at low and high tide, from the same spot

Big log
One biiiiiig log, filled with iron spikes and steel cables, that we finally put out to sea at a very high tide. It took the tide, brains, brawn and human couterweights to get that log out, and then four of us swimming with it against the waves at dusk to put it out for good. Happy memory of Sev yelling to us (Tara, Tamiko, Midori and Peter) from her boat, “You guys are hardcore!” 🙂

Tamiko, Kylee and Severn concentrating intensely
The winning team of a fiercely competitive game of Cranium involving everybody but Jon

Laura, Tamiko and Jon
Midori relaxes as Laura, Tamiko and Jon enjoy the sunshine!

Laura and Jon at the campfire, second photo of Tamo, Kylee and Midori
Campfires in the evening!

Eastern view
The view

Part the Third: Laid up
We left the Campbell River Airport on Saturday the 15th, bound for YVR and a connecting flight home. During the flight Jon hit his knee against his tray when the airplane made one of those seatbelts-on alarms that go “ding”. We had a two-hour wait until our Toronto flight, so we were cruising the eateries in Departures, looking for lunch. Jon was progressively hunching more and more in his wheelchair until his head was below his knees. When we tried straightening him up he started screaming (and boy, can he be LOUD). Finally we took him out of his chair, laid him on the floor (still screaming), called First Aid. Upshot: Jon and Laura ended up in an ambulance to Children’s Hospital. Peter followed with the wheelchair in a taxi paid for by the airport. (Both Air Canada and YVR airport, by the way, were wonderful and very accommodating. No problem getting an alternate flight. Colour us very impressed.)

Luckily, despite our initial fears of 1) seizures and 2) bone fractures, it was diagnosed as a muscular issue. Jon’s muscles are always quite tense (hallmark of cerebral palsy), and he gets even tenser when he’s nervous. Add to this the pain of banging his leg, fear of the airplane noises, and sheer tiredness (he got to sleep very late that night) and his leg went into huge and continual spasms. At emergency he got a dose of muscle relaxant and Advil and we were told not to fly for about 48 hours. Finally, on Monday we got to Toronto. Jon was great on the plane (would only say “ow” quietly when his leg spasmed); once we got home he felt free to let ‘er rip with huge amounts of overtired and pained screaming and crying.

Jon is not much better now, though we’re not sure how much of it is true pain and how much is tension from the pain. Jon has missed 4 days of summer camp, and we’re off to the doctor today to see where we are.

Jon marooned
About as active as he can get, poor guy.