Yes, we’re still here. Jon was off Tylenol about four days ago. The clue was when he was rolling on his stitched up leg without meds, happy as a clam.

He was allowed to have a bath as of the weekend (and there was much rejoicing). Zimmer-less and fragile, I did carry him gingerly to the bath, and yea though we both anticipated pain, there was none. Given that, I’m no longer forced to carry him in the Gone with the Wind pose, which is good news for my back; there just wasn’t an easy way to lower him using just my legs.

The two-week mark also means that Jon can lose the zimmers for a period of time during the day. The doctor said he’d like to see them on for bed and 3-4 hours a day. Since we’re in early days, we’re still having Jon wear them a lot longer than that, but that will change as time goes on.

Jon’s back into spelling lists and reading. He’s read some early fun readers, sometimes reading the 56- or 62- page books through in one session.

Trying to fight boredom, we’ve been out a bit. Since Jon’s pressure sore seemed to be as a result of him AFO and Zimmers on the first trip, we’ve been careful of straying too far walking, but we did get out for a drive north during the extreme hot weather (it wasn’t any cooler) for a project yet to be discussed on the blog. And Jon and I went to see Cars again, with Meghan. He enjoyed it even more the second time.

But for the most part, we are still at Jon’s beck and call. Generally, his calls (which are often, and often rhetorical) are tactical in nature: urgent calls for whoever is farthest, and potentially busy keeping the household going in some way. Can’t have that.

So we are exhausted. But things as about as good as can be expected.

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!