Jon was completely detubed as of last evening (last just-in-case IV socket was removed) , but the homecoming will be later today, after Dr. Unni is out of the OR and has time to give Jon the once-more-over.

Last night was the first one where he didn’t just drop off quickly. Instead he occasionally made comments to me, confirming that his leg is fixed, that we had flown from Vancouver to Toronto, that sort of thing. I don’t know if he was in so much pain and stress during those times that the events weren’t firmly cemented in his head, or whether it was the morphine causing some free associations now that the worst is over.

Now that the epidural is gone, Jon does feel the wound and the zimmers are annoying him, but that’s how it should be at this point. The epidural prevented any muscle spasms, which is a far cry from last time (five years ago) when it did not go well at all. Spasms, pain, and all the side dishes of stress that come with the first two.

I’m at home finishing some modifications to his wheelchair. Now to figure out sleeping arrangements…

Now we’re into the short strokes…

Jon’s epidural was turned off at 10:30 this morning, so he was allowed to take a wheelchair stroll anywhere in the hospital rather than be restricted to the one floor (opiates—in the big, honkin’, easily-obtainable syringe on top of the infusion pump—are not allowed to be taken outside). We rode the elevators up and down for a good long while (I get the impression that staff are used to patients doing this), then took a walk to the far end of the hospital for a Timmy’s doughnut.

All his tubes were taken out at 3:30 this afternoon. As of 9:00 in the evening he’s feeling fine, with all pain management completely taken over by oral meds. Much better managed than five years ago.

Thanks for today go to visitors Pamela and Jeff, Andy (we’re so sorry to have missed you, Andy, but a visiting and babysitting Grandma presented an offer—get out for dinner—too good to refuse!)

Discharge will definitely be tomorrow, but we don’t know when. We’re betting on morning, but still have some meetings with health pros to undergo so I’m guessing we’ll be kept busy during our stay.

Incidentally, Laura and I are sleeping at Sick Kids on alternate nights, and as I just got a quick phone report from last night’s correspondent. Looks like they are looking at taking out the epidural today or tomorrow morning. Likely they’ll be springing him tomorrow.

Much preparation at home for this.

Jon has been telling all of the doctors who drop by today that it is the release date of the Pinky and the Brain and Animaniacs DVD collections Volume 1 (which it is, and ours should be here by tomorrow).

Gotta run!

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.