Home is not an analgesic. Asleep, he was so peaceful that Laura and I forgot about his 10 p.m. dose of Tylenol, and Jon awoke at 12:45 in major pain, including the first muscle spasms we’ve seen since surgery. We pulled out some heavier pharmaceutical guns, and with that and a half hour of hugging Mom, he calmed down and slept the night through. Except for us waking him up every four hours for Tylenol—we’ve learned our lesson.

About an hour after we were told that Dr. Narayanan was in the OR and we’d have to wait until late afternoon or early evening to be discharged, in he walked with a huge entourage. Residents, the head nurse, our nurse, even the physiotherapist. He gave us our final marching orders, the nurse took a half hour to cut those orders and off we went. Well, with a stopover at the pharmacy, which did test a boy’s patience.

(With regards to pain, Jon is doing amazingly. This is not nearly as bad as last time, and he is on Tylenol, with some optional extras if need be.)

The drive home was just as bumpy as the drive to the hospital, but the difference was now Jon was not uttering tiny ows for each bump in Gerrard. As we approached our neighbourhood, Jon put his head back, and in the two minutes it took to finish the trip he was in a deep, relaxed sleep. There had been so much talk of getting home; it was as if his nervous system could finally relax.

It was so hard, but I had to wake him from by moving him from the car.

But later at bedtime, as Laura read to Jon in his own bed, he drifted off even as she read. With a beatific smile on his face. Home.

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…

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!

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.

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.