Chez PLJ

The pain has lessened and Jon, despite his restrictions and the occasional discomfort, is pretty happy. He sleeps in his bedroom, and I carry him downstairs for the day’s events. He sits in an armchair with his zimmered legs on an ottoman.

His legs have to be in the zimmers pretty much full time for the first two weeks, so aside from showering and a bit of range physio, there he is. With the help of a makeshift tray and a new small table, Jon can enjoy his meals there, as well as all of his usual vices: The Weather Network, LeapPad, videos, PlayStation and computer. The universe more or less revolves around him in this configuration, which is probably a really bad precedent.

Jon’s already rolling around in bed on his own, though sometimes he needs help in the middle of the night stacking/balancing the zimmers if he wants to sleep on his side. Pain medication is still necessary at night, but not so crucially. We attempted an experiment with Tylenol 8-hour, which purports to serve up two 325mg doses of Tylenol in a row in one pill. Jon woke up at the 4 hour 20 minutes mark with pain (but nothing another dose of Tylenol didn’t fix). Richard just did a little digging for and found:

88% of the total amount of drug is released into the system within the first three hours! This is perhaps not as bad as it sounds, because you have to remember that once the drug is released, it still has a 1-4 hour half life. Still, there’s a lot more drug in the serum during the first 4 hours than during the 2nd 4 hours of the 8 hour period the extended-release formulation is supposed to cover.

So, Jon is not nuts. The extended-release formulation is not what it’s cracked up to be.

Thanks, Richard.

So back to setting the alarm clock for every four hours.

And coping with pressure sores. As usual, if you more or less immobilize somebody, no matter how you cover or pad their bonds, there will be a pressure point. The clever folks at the hospital thought we could protect Jon a bit by using his AFO’s (his regular orthotics that stretch his Achilles tendon), but in practise somehow the AFO made a particular point on the zimmer worse. So now Jon has a nasty sore spot on his right Achilles tendon area, and it’ll be really hard to get rid of until the zimmers are off for good.

But otherwise Jon is happy, and clever enough to try to avoid school homework, like reading or creative writing. And given that he ate 1/2 of a medium-sized pizza last night, his appetite is back too.

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…

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!