First off, thanks to everybody who has been commenting and emailing. It really gives Mom and Dad something to look forward to!

For the first time in 8 days, Jon’s slept comfortably, thanks to the epidural. The nurse found him in fetal position at one point, which he hastened to stretch out, though Dr. Narayanan and his orthopaedic Fellow later dismissed any concerns; Jon’s apparent comfort was evidence that he was in no pain. Besides, Botox (FYI—Botox has been used for decades for medical muscular cases, but only recently did it start getting used cosmetically) takes a day or two to affect the muscles, we were told.

So today Faye the ortho-tech came along and slapped on two “zimmers” — padded yet rigid legforms; overgrown double-sided shinguards, really — which keep Jon from bending his knees. For the first week or two, Jon will have to wear these all the time, and after that as much as possible. They are there entirely there to stretch his hamstrings.

Jon got his appetite back starting at midday, and gradually getting back into eating, with proper pizza and a hot dog for dinner.

Nurse Deme got us out on walk today (notice the IV and epidural machines behind); it turns out that this was the goal of the physiotherapy dept. and also helps address concerns of post-op chest infections.

Jon spent most of the day watching DVD’s, and mostly ignoring guests such as David Barker and Richard Leung, and of course, Grandma. His body is clearly showing some relief, but now that he can’t move his legs, he’s once again a little stiff and grumpy about it. We’ll start to reduce his addiction tomorrow…

A threesome from Sick Kids’ Pain Management Team came in twice today to ensure that Jon was comfortable, and were quite happy. So far, his comfort level is far higher than it was five years ago, and we are very impressed. Everything about the level of care is sharper.

Incidentally, to follow up on our Laura’s comment in the last post: Jon will indeed need an osteotomy on his other hip, and it will be happening sometime next year. The ball and socket didn’t form well enough, and the leg is now slipping in the socket and it would lead to early arthritis and many bad things. If we can catch it as he continues to grow, we can reestablish the solid joint we had. Sigh. So this isn’t over for Jon yet.

Grandma showed up third day in a row this afternoon and kicked us out to eat away from the hospital. What a star! Thanks Grandma!

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

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).

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!

Jon was wheeled into the operation room at 11:55 this morning. The operation will take from 2.5 to 4.5 hours.

It’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.

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).

Laura 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.

It 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.