Jon's Official Welcome (c. 2001) to the Website (requires Quicktime)
Entries are in reverse chronological order, so scroll to the bottom of the page to start at the beginning.
Back at it
Thursday September 6, 9:00 PM
I know, it's been a while. He's been squrimy.
Since the last update, we've been swimming many times at Grandma and Grandpa's house, and Jon's impressed everyone with his desire to do laps. He taught himself the front crawl, and with one of my hands under his belly he swims straight into the deep end, all the way to the wall. And then back. And again. Sometimes 8 or 10 times. Unbelievable. And throughout the pool sessions, lots of dunking (one-two-three-GO! (both go under)). Our guy is a real tadpole. Oh, the leg, well sometimes it kicks, sometimes it doesn't.
Before school got started, we had three sessions of physiotherapy at Bloorview MacMillan, where Ka-Kei and Jennifer put him through his paces. They were great; they just kept pushing him on.
Jon's physio is basically standing, stretching and generally moving about. The cast is still worn at night (to keep stretching muscles and tendons as things heal), and will be for two more weeks. He has no problem with this arrangement, I wonder how he'll react when he doesn't have to wear it. Sleep periods are longer, but still not more than 4 hours at a stretch. His leg is very tender each morning when he comes out of the cast, but over the day is gets more sturdy. Jon tends not to put a lot of weight on it yet, so while both his legs were quite thin when they left the cast, the left one has since thickened up to its former bulk, and the right one is slowly doing the same.
Physio is somewhat hampered by the "habits" each leg has picked up in the cast. His left (untouched) leg spent six weeks and more nights perfectly straight in the cast, so combine that with it's unnatural spastic tone and it's rather hard to convince it to bend on occasion. Meanwhile the right spent six weeks with a small bend, so Jon isn't to excited about fully extending or contracting it. Time.
Jon's very happy to be back at school, and quite frankly I'm rather relieved myself. Everything with his role as Mr. Senior Kindergartener is going well. The only regrettable part is that he's in his wheelchair all day except rest time, and his hips need rest from that position, and movement in general.
At home, we've seen our first bit of belly crawling (Laura and I were at the computer for about a minute and he HAD TO SEE WHAT WE WERE DOING ON THE COMPUTER), but no four-point crawling yet.
The reason for this page is to keep folks up-to-date on a topic that was the entie focus of our concern during the summer. But the recovery part of Jon's Operation will take many months, change will be gradual, and we're at a point where real life--school, his birthday (Sept 12), Hallowe'en--now command as much attention. Which is great.
So, thanks to all of you for popping in to check on Jon. Your love and concern helped us through a trying period. Keep checking into his usual page, and don't forget to drop us a line now and then to see what he's up to.
All our love,
Peter, Laura and Jon
Thursday August 9, 11:00 PM
Steel Yourself
As promised, you'll find the x-rays at the bottom of this post. If you're squeamish, you've been warned.
We began Jon's physio today with some light stretching, light weight-bearing (on his knees while his torso was on my chest) and some swimming. It's tough to stop him from overdoing the kicking and then just stopping for a long while (as the every bit of soft tissue in the leg wonders what hit it). He then added some unspotted weight-training this evening by trying to crawl along the floor when neither of us were looking for what--thirty seconds?
He wasn't moving fast, he looked like he experiencing discomfort (not pain), but he had the expression of the little engine that could. Oh yeah, and he hasn't crawled on his knees in a year, since the right hip really started giving him trouble. A day after coming out of the cast.
It will be about a year to get back to where we were, if we can, and beyond, if we can. The whole way we'll be fighting his own body. But it's that tenacious choo-choo train I saw that gives me hope.
Now to the x-rays. Don't be phased by the fact that Jon's hips are in slightly different orientations each time, depending on how he felt like twisting as the flash went off. Click on each to see things in more detail, with commentary. And take a gander at that hardware Jon's packing!
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| BEFORE | POST-SURGERY | 6 WEEKS LATER |
Wednesday August 8, 6:00 PM
Off
Jon's legs exited their fiberglass prisons today with the whine of a nasty-looking saw (it looked like a nuclear-powered pizzacutter) and the screams of a 4-year-old watching a woman going at his immobile legs with said nasty-looking saw.
Such is the state of Ontario health care that an appointment at Orthopaedic/Fracture Clinic for 9:00 will get you an x-ray by noon and in to see the doctor by 2:30. Still, the staff do their damndest, and it was very good news.
As Dr. Andrew told Jon, "Your insides look great!" The bones have healed very well. Crevices are filled in, new bone callus has built up around the stainless steel. This callus, which will turn to bone, is still soft, but now that Jon can put some stress on it, it will slowly start firming up. Boy, you should see the hardware store he's got inside of him (with any luck you will very soon; I'll be able to post shots of the x-rays tomorrow). Of course, it will take months to know how Jon's muscles are working (they put botulism toxin in some of his leg muscles--to reduce spasming right after the operation--and it takes 3-4 months for its effects to diminish).
Dr. Andrew has granted Jon permission to start slowly stretching and gradually start to put some weight on the legs. Swimming therapy can start now. By 8 weeks, he'll be allowed to stand with much assistance and supervision.
Oh, and that cast that has been keeping Mom and Dad sorta dopey for the past six weeks? Another six weeks of sleeping in it. Ug.
So we'll be out and about a lot more. If anybody wants to come swimming with Jon, do let us know.
Friday July 27, 4:00 PM
The Unbelievable Lightness of Being Awake
Well, we've had three nights of good sleep here, so we're all bums-a-wigglin' happy. In no way is it solid--we're still up 4 or 5 times a night--but it's become business-like, and even when Jon is crying from sleepy frustration, I turn him, and he quiets down and I can head back to my bed without offering crisis counselling.
Laura's mom Joane has been here for the past two weeks, hanging out and taking long sessions of entertaining Jon. The time she's given us, especially Peter, has been priceless. Thank you Joane. Moreover, it's given Jon a chance to spend quantity time with Bachan, which we're glad for. And Laura's Uncle Dave and Aunt Anne provided a brilliant, practical and well appreciated contribution from afar--mucho money for take-out food! Wow, what a great idea!
I realize that this page has been less and less related to "Jon's Operation" and more and more "Jon's and His Parents And Their Sleep and Flipping Habits". Well, save some terrible calamity or exciting event, such as Jon growing a third hip AND a leg from such, I think we'll forego any posting for the next few days. Jon and I have begun a daily morning countdown every morning, and Uncle Erik's new clock will soon lead the way to CastDay, August 8.
Will the Cast come off that day? We don't know.
Will his leg be oddly distorted from constant flipping? Yeah, we're probably paranoid.
What will he be able to do when it comes off? (Apparently, not much. No weight bearing of any sort, and maybe not even swimming, yet)
Where is this line of questioning leading?
Well, obviously if a four-year-old in a cast isn't totally happy about his restricted movement, one without a cast with be at least as p-o'd. Visitors are strongly encouraged; if you're inclined, you're invited.
Jon and his parents will be avoiding weight-bearing throughout the month of August. Reserve your spot early. :-)
See you on the 8th.
Tuesday July 24, 4:00 PM
Nessun Dorma
Jon's napping right now, which is no big surprise--despite the effort it takes to get him to go down. The past few day/nights have not been ripe with sleep, and the past two nights have been abysmal.
There's nothing like going to bed knowing that you'll be woken up soon, and repeatedly through the night (even if it is for the best of reasons). Ideally Laura should be shielded from these turnover and comfort sessions so that she can traipse to work as fresh as a daisy. But she can't help waking up, and the stress is starting to have it's effects. Last night, Laura lay awake without sleep from 1 am to 5 am...
Supportive messages from hubby only go so far at this point. So if you want to send her a supportive message, fire away to: laura@doodletronics.com.
A tip: don't refer to concepts like "solid nights of sleep". We haven't seen anything like for almost a month, and since he'll be wearing the cast to bed--even when it's "taken off" (hopefully 15 days from now)--we won't for a long time. Best not trigger a psychotic episode any sooner than we have to. From either of us. :-P
Saturday July 21, 6:00 PM
The 4 a.m. Clean and Jerk
You know, there is no particular event more exciting or challenging in this whole adventure than turning Jon over in the middle of the night. Not only is he 40 lbs and has to be held horizontally and the two "halves keep even" (no twisting), but it's the 22 inch wide triangle at his base that adds the most challenge. Picture a triangular pallette being flipped on the arms of a forklift.
Getting him to his belly is getting easier because Jon can assist by turning to hug me, but reversing isn't so simple. He has to be flipped over without going over his newly constructed hip (he can't bear weight on it either, when holding him; in the middle of the night it is oh-so-tempting to rest his legs on the bed whilst turning him). So I have to roll him AWAY from my body. Add to this a couple things:
For those keeping score, Jon completed a full 180° flip safely two evenings ago just after being put to bed. We heard a noise about three minutes after his mom had tucked him in and I went up. There he was on his back--and I had left him on his belly. I asked him if Mommy had flipped him (Laura's never done a belly-to-back turnover) and after a calculating pause he replied "Yeah...Mommy..." Hey, we're almost at the stage of credible lying too :-)
And tell us, dear readers, how do you thank someone who is committed to saving the sanity of a parent so much that she'd come around two or three times a week for a visit with Jon? Thanks Lynn Westerhout.
Monday July 16, 11:00 PM
Peter is 36 today. And now he'll post the entry for yesterday.
I'm not sure what the point of the diary is lately, given that the most exciting thing it can chronicle is that we are all sleepy.
Jon's doing well: he's pretty much off medication, although we do slip him some Tylenol if he gets upset and says he's in pain. It seems this has to do with the healing skin, and his occasional PULLING ON THE STITCHES. How this could possibly hurt, I don't know.
During the day he's great until he descends into naptime, angrily fighting all the way. His favourite hobby in the daytime is sticking Judith's stickers all over his cast, then ripping them off again. Great fun, and now we've run out. Crisis. His favourite hobby during the night (when we can't prevent it) is mining hunks of the cotton wrapping from deep within his cast, which I'll bet is another big no-no. I'll be calling the hosptial tomorrow. I wonder how common this behaviour is...
Diane and Eric brought a bunny named Betsy on Saturday, which wasn't of much interest until Cranky Jon heard it chew a peanut and howled with delight. Then Betsy was welcome to stay near him and on his lap, which Betsy did. This was a surprise to D&E, because Betsy's ten minute stay on Jon's lap was as long she's ever done close social contact (even with them). Also, considering that she's formerly abused and Jon was touching her with the sensitivity of an anvil (not to mention fighting sleep by hollering phrases Like "EEEAAARGHHHUGGGH"), well...they really hit it off. Wow. Huge thanks to D&E. And to Ruth who dropped by the Sunday morning to chat and give Jon the most precious of gifts...a new Pinky and the Brain video! And allow him to watch it. (!!!). And MC, Alberto and Zander brought a pie!
Thursday July 12, 12:00 noon
Two of us got some sleep last night--Jon and Laura. I got stressed and stayed up reading, but Jon slept from 8:30 pm or so to 8:00 am with 5 or 6 wake ups, mainly wanting to shift. When you consider it, that isn't half bad.
Some of the wake-ups invovled a screaming guy reporting pain. This is the most stressful part of our lives right now. When Jon says his leg hurts, we've got to establish:
or in the case of this morning:
Meanwhile, during the day, and some of the night, the Tylenol schedule is starting to slip...the background pain is apparently starting to diminish. Hard to tell though with such a tough little goober.
Please visit. We've had much fun to date, although Jon has been known to encourage visitors to hit the road at any time. Ignore him. Stay and chat. He'll learn to socialize happily with others even if it scars him for life :-)
"HMS Lotso Plywood": The adapted chair, fresh from a seek-and-consume ice cream mission.
Tuesday July 10, 10:00 p.m.
Well, things continue to improve. Jon is doing more and more of his everyday stuff, and his appetite and milk consumption have returned to their normal high-school-football-squad levels. The mood here isn't down, it's just a grind. Jon's getting used to the new routines, except sleep.
Nighttimes are still nuts. We're all sleep deprived, and until Jon can bear sleeping in the A-frame, we all will be. He generally has a catch-up nap of 1 to 2 hours in the afternoon, but that isn't enough, and he's starting to fray around the edges. As are we all. We realize now that Jon is one of those constantly moving sleepers,and he can't stay comfortable in just one position.
Now I hear everybody asking, "Did you ever put him on his belly again?" and "Is he flipping?" and the answer is of course. Lying belly down belly seems to be his favourite postion, and gives him and us, some sleep, if only for an hour or two, so I can't bring myself to avoid using the position entirely. I put down some clever anti-flipping hardware (okay, blankets, pillows and cunningly tucked in sheets that are loose, but "tight" if extended--genius at work, huh?). Alas, my cunning is no match or my son's unconscious tenacity. Last night I came running when he started crying an hour after I left him on his belly. I found him in the corner of the pillows, with his legs above him, the wooden crossbrace 2 or 3 inches from his head (kinda jackknifed, but fine). He's just a guy on the move.
Visitors have started to appear, which is great, and sometimes Jon thinks this and sometimes he's a little to tired to realize. We are indebted to those who are visiting, especially Lynn who has decided to come regularly. It breaks up the parental monotony. Or as Jon would say, "Daddy. Read a book. No spelling. No. Spelling. Just read."
What challenges for the future? Well the biggest is going to be the Clean and Jerk Diapering Competition. Remember, he has to be lifted as a unit, and Laura heads back to work next week. Anybody got a block and tackle?
Synergy: I took this picture the night before the operation, and took a similarly happy one tonight.
Friday July 6, 8:00 p.m.
The past couple of reports have been rather down-in-the-mouth, partially due to the time they were written: we're exhausted, and Jon has already begun the night's routine of waking up in pain or, more likely, frustration. Coming down from your writhing child just takes the Pollyanna right out of you.
Today was quite good. Far less pain than previous days, the swellng is going down noticably and Jon is smiling a lot. Two days ago we'd only seen a couple of smiles and a giggle, but now we can engage in open tickling warfare. He's also finding approprite ways for rough play, including pulling Daddy's head hard into his own torso, oh, 20 or 30 times (with constant giggles). Then we did some gentle headbutting.
We've souped up Jon's wheelchair with a "Y" board to allow us to head out for walks, so we're making tracks tomorrow. Not long ones, but out of these four walls.
I thought that the improving conditions were highlight enough, but we were in for one more welcome surprise this evening when Dr. Howard, Jon's surgeon, called to discuss his flipping in bed (reported yesterday). Remember how I said that Jon can't be the first? Well maybe not, but apparently he's in the extremely rare bird category. Dr. Howard doubts any damage was done, but suggests we discourage such activity for three or four weeks, in case of one of those one-in-a-hundred type of bad landings. After that Jon can be given a little more leeway (although nothing our surgeon said actually advocated installing gymnastics equipment in Jon's room in the near future).
Best of all, Dr. Howard paid Jon the most wonderful compliment: "You must enjoy living with this guy. He's really a surprise a day, isn't he?"
Thursday July 5, 11:00 p.m.
The day started out with a bit of excitement...Jon figured out how to roll over from his belly to back in bed in his cast...something that he shouldn't be doing. I made a call to the nursing station this morning, which I hoped would provide some tips on preventing this potentially dangerous activity. Instead, they aid that they've never seen that before (probably, we think, because it happens when the kids are at home, drugged less, and frustruated in familiar surroundings. Jon can't be the first.). If Dr Howard or Elaine are reading this, any thoughts?
He's doing well during parts of the day. Pain comes in sometimes; he's on Tylenol constantly and it's the transitions that are the worst. Jon often starts hurting about 20 minutes before the end of the 4 hour periods, and it takes about 20 minutes for the pain to fade after dosing. Still, we avoided using codeine today, so that's something.
Clearly it's overnights that are going to be the big problem. Jon just can't sleep in the cast in his bed. We've been answering his calls about 12-15 times a night. The poor guy is pretty upset. What's worse is that even when the cast comes "off" it's actually going to be converted to nightly sleeptime use for at least a month. So the worst aspect will continue.
The saddest part of the each day are the times when Jon is in major pain, and starts to cry, and sometimes he says "baby"--his shorthand criticizing himself as a bawling baby. And we try over and over to tell him that he's so strong and brave, and no one else can handle it any better. Pain all over.
June 29, 2001.
Just out of post-op, with any number of wires and tubes coming out of him...
June 30, 2001.
Not a pretty picture, but that's how it was. Sitting in a diagonal propped position. Some wires gone, restraints and diapers on to keep the rest there. Somewhere in there is the epidural catheter.
July 1, 2001.
The best drug imaginable. With the epidural gone, the background pain fades in consultation with Dr. Wakko Warner.
July 3, 2001.
Home. Wiped. And a good shot of the cast.
July 4, 2001.
Travel arrangements for the next number of months are with Daddy Airlines. Jon's top and bottom halves must be carried as one unit.
Wednesday July 4, 8:00 p.m.
Laura turned 37 today.
Well, with some sleep in our own beds and some reality checks, we are less gloomy than last night. The TV is not broken, but in the consternation last night it was shifted to give Jon a better view, and the shift pushed it against a speaker, the magnet of which distorted the picture. A two-inch shift back was the only repair neceasary. I could edit out this whole embarrassing and fairly obvious incident, but I think I goes a long way to tell you how much rationality we were using at the time.
Meanwhile, a chair that Peter inherited from generations back (one whose proportions made it were so that it was never entirely comfortable, nor ergonomic) turns out to have been created pretty much for future osteotomized decendants. Jon can fit "just right" while enjoying meals in the kitchen and or computer in the studio! Good thinking, great-grand geezers!
So Jon is much happier, but still with lots of pain ("owee-oweee-ow-ow-ow!"), espcially when we move him from one room/position to another. It's going to be a long 34 more days before they even think about removing the cast, so if you're reading this and are so inclined, please pay Jon a visit or two. His report card says he needs more socialization, and he loves to be read to.
And now to the award program portion of the show. So many people to thank, and this is probably the wrong place. But onwards...
First and foremost, thanks is owed to Dr Andrew Howard, and his team, for the obvious skill and dedication involved in this. The next team is the nurses and staff of Sick Kids 5A, especially Elaine, who scammed Jon a VCR amongst other heroic deeds (Jon owes you an ice cream, E), and Meredith, who had the singular ability to test all of Jon's vitals while he was sleeping and not wake him. Meredith also showed outstanding strength of character, when she didn't belt me when I cracked the "Holly and the I.V." pun (mind you, I was holding Jon at the time, but still). Both Grandpas, Judith, Intan, Andy & Elspeth, Pam, Sue, Posie, and Erik, thank you for visiting and keeping our spirits up. Grandma, who came in from Mississauga EVERY DAY to allow us go to dinner together, we owe you so much we don't know here to start. And the gifts to Jon, the muffins (Auntie Patti) and chocolates (Valeria), and emails--thanks to everybody.
Finished the film tonight, so photos tomorrow.
Tuesday July 3, 8:00 p.m.
Peter reporting for duty, and Erik can retire with full honours! Jon woke up by dinnertime, had a decent dinner without dozing off, and filled a diaper (the prerequisites for leaving) and off we went in a snail's pace of motion, arriving home around 7.
Upon arrival at 142, Jon was all smiles (the first since the surgery)...but reality started setting in. In the living room, he must sit on the couch supported by pillows. He can't go down. He can't go roaming for books after we tuck him in. He is a prisoner. Life isn't what it was. And he can't figure out what he's being punished for. We are all starting to realize how hard the next two months are going to be. It's heartbreaking.
And to top it all off, our year-old TV is on the fritz. Just when we need it the most.
Tuesday July 3, 2:00 p.m.
Valium, as it turns out, is cumulative, and has a bit of a delayed reaction. So Jon is one out-of-it dude today! At any rate, the spasms are pretty much under control, and as soon as Jonathan gets back a little more of his energy, the family can pack up and head home. Yippee!
So, NO MORE VISITORS TODAY! Unless you, too, just want to show up and ride on the elevators. Jon, Ma, Pa, and bags o' Bugles should be heading home early this evening, so if you try to drop by, you'll probably be visiting a bunch of people you don't know. This is all very good for the community and all, but we understand if it is at odds with the intentions of your visit. Definitely call first.
Monday July 2, 8:00 p.m.
There's still a little worry about this, but Jon may be out as early as tomorrow. The big concerns are, (1) Jon is still occasionally spasming, and, (2) How to get him and that big ol' A-frame cast into the car...then into the house...then whether or not he can be moved up the stairs and into his room!
At about ten to seven, Jon fell into what looks like his first good sleep in days (thanks, Grandma!), which hopefully means that Mom and Dad can catch up a bit on their sleep, too. For most of the afternoon, Jon was tired, but the spasms infrequent enough that he could watch a few videos and play on the iBook (honestly, Apple should contract the kid out). He's also going through a real Bugles thing (the salty corn snack, not the ubiquitous band instrument), snarfing them down one after another like... like... uh, like some sort of really cute Bugle-snarfing thing. He's also enjoying frequent rides in the really neato glass elevators that grace Sick Kids new addition.
So hopefully things will continue to improve, and Jon, Peter, and Laura will be able to sleep in their own beds tomorrow night.
Monday July 2, 1:00 p.m.
Things are a bit more stable today. The valium seems to be working at least a little. After an awful night (with poor Jon sitting up regularly with every spasm), the spasms have subsided enough that Jon can doze, and is in somewhat better spirits when awake.
So, again, call first, but come if you can. Jon may or may not be into visitors depending on the state of things, but Mom and Dad can sure use the company!
Sunday July 1, 8:15 p.m.
CALL FIRST BEFORE VISITING.
Please. Since the last update, Jon's leg has started spasming. He went through another hours-long bout of heavy-duty pain, but this, at least, they were able to control through codeine and morphine. He was also given valium for the spasms, but it doesn't appear to be working.
Apologies to those that showed up earlier this afternoon but were not allowed to visit. Things are a bit touch-and-go right now, so yes, visitors are welcome, but please call first to make sure things have calmed down enough. Th number again is 416-813-7600, ext. 3734 before 9:00 p.m., and the place is Sick Kids, Room 25, Ward 5A. Thanks again to everyone in advance.
Sunday July 1, 2:45 p.m.
ALL VISITORS WELCOME!!!
JUST AS the Pain Management team showed up, Jon of course made a spontaneous recovery and is no longer in pain. In fact, he's his usual bubbly self, showing Peter all sorts of new keyboard commands in the iBook. So, the Pain Management team has put Jon on codeine for the time being (still deciding about morphine) and have shut off the epidural prior to removing it.
What that means is:
Now, when we say "welcome", we of course mean it in the German sense of Welkommen, which may sound polite in Bavaria, but, let's face it, sounds like an order everywhere else in the world. You get the idea. "Welcome" in the same way that David Niven was "guest of his majesty the Emperor" in Bridge Over the River Kwai.
So feel free to come on down! Pa's got the jug and washboard set up for the jam session, and Ma's got the moonshine going.
So please visit. Don't make us come to you. We have the loudspeakers. We have pissed-off-Jon sounds on an infinite tape loop. DON'T MAKE US GET PANAMIAN ON YOUR ASS!!! Free spleens to the first twenty-five visitors. Sorry, no rain-checks.
Sunday July 1, 12:30 p.m.
It's a big day for the Pain Management team as they are deciding when to take Jon off the epidural and put him on either codeine or morphine; probably the latter. Earlier today, the area of the operation began swelling up and now Jon's in a lot of pain. The Pain Managment team isn't quite sure at this point of the reason for the pain as the epidural does seem to be going in as planned. So it looks like oral medication might now be in order. As always, we'll keep you posted.
Meanwhile, Jon did have a couple of visitors today, but unfortunately couldn't see them. The gesture was still much appreciated, though - thank you!!!
Satruday June 30, 9:30 a.m.
Peter here. A quick note while I'm back home to pick up toys and other things, then Erik will take over again.
As Erik has passed on, there is much relief for us that things went very well. Jon is in and out of sleep. I got more sleep than Laura last night. Much of the latter half of the night he'd call out for Mommy in a small voice and she'd go to him, and he'd drift off again.
He'll be on liquids today, since he couldn't keep them down last night. Jon's restraint is off one hand, which means the chest leads are all off (yes he took them off) although he does keep going for his IV, epidural lead and his catheter. Given that there's a balloon at the other end in his bladder, that might hurt a titch. But he's not beyond trying it in my opinion.
Jon's got an epidural, which means that he doesn't need heavy-duty pain killers at this point. In fact, it was so effective in surgery that he needed minimal gas to keep him under. In the next day or two they'll be taking off the epdiural and he'll be switched to morphine or codeine.
The long stay in post-op was due to some confusing effects from the epidural. Jon's left foot, the one they didn't operate on, was quite warm and the right was quite cool. Possible circulation difficulty? Dr. Wei (sp?), (Dr. Howard's Asst in the surgery, and as of today, a fully fledged and real orthopaedic surgeon--Jon was his last shift. Congratulations Dr. Wei!) came in and noted Jon wasn't covered very much (none of the kids are in post-op, they've got tons of wires and tubes) and that his cool foot was only sightly colder than his body (in Jon and I, our feet are the first thing to get cold). The three doctors figured this is what happened: during Jon's operation, he was on his side with the right hip in the air. More epidural fluid got to his left side, or pooled there, shutting down his sympathetic nerves in his leg, and making the veins dilate and the leg get hot.
I'll leave you with some drawing of the hip operation and blade plate made by that great surgeon and wonderfully patient (I asked a lot of questions) Dr. Andrew Howard.
Friday June 29, 8:45 p.m.
After more than six hours in post-op, Jon is now resting comfortably. Those that want to get in contact can reach the [relieved and exhausted!] parents at 416-813-7600, ext. 3734 (Before 9:00 p.m.! After 9:00, you can call 416-813-6948. But all you'll get is the nurse's station, and who knows what may happen after that...)
Also, Jon et. al. are in Sick Kids, Room 25, Ward 5A in the Atrium. Come on by! Peter's got the hibachi set up and everything!
WHY THE DOCTORS FEAR THE MIGHTY BEAR (updated): Jon was only concerned with ripping out his IV before Dr. Howard arrived for one last check. At that point, Jon proceed to figure out in how to disconnect cardiac and resp leads with one swift pull. After showing the surgeon that he could disconnect each of the three faster than Daddy and Dr. Howard could get them back on, (with his eyes closed, no less), Dr. Howard provided him with a dry rolled washcloth to play with instead. Jon humoured the doctor only so far, gave it a couple of squeezes as instructed, hauled it back over his head, and threw it straight into the doctor. Both of Jon's hands are now in restraints.
The doctor's comment: "Hmmmm. Jon isn't as out of it as he's pretending to be..."
Friday June 29, 3:00 p.m.
Out & awake & PISSED OFF!!!
Things went so well that the surgeons don't feel that a full body cast will be necessary after all. Instead, despite operations on both his pelvis and his leg, Jon will only have to suffer the discomfort of a leg cast with some wrapping at the hips. So things are pretty stable.
Except that he's hungry, too!
P.S. We should have word pretty soon on a room number.
Friday June 29, 2:15 p.m.
The operation is into overtime. No word yet = full body cast.
Friday June 29, 11:15 a.m.
The operation is under way. Mom and dad are hanging in there, as is our stalwart hero, Jonathan. Living up to his Japanese name ("Mighty Bear"), Jon bravely faced the news of the operation by asking the doctor to read to him. And with further Bond-like cool, given a wine list of flavoured anaesthetics to choose from, Jon unhesitatingly selected watermelon ("Shaken. Not stirred."). Only a couple of hours left, then the groggy little guy will have to face his greatest challenge yet - hospital boredom.
Thursday June 28
A series of lasts for awhile: Daddy and Jon, freshly free from school, spent the day swimming with cousin Meghan at Grandma and Grandpa's. Followed by his last pre-op meal (he can't even have clear liquids after 6 am) and his last bath for a month. In the hot weather. Mmmm, doesn't that sound great. We're due at the hospital at 7 am.
Wednesday June 27
Credit where it's due: Before things get stressful I should mention that the code for the automated operation clock and random photos above is courtesy of our dear friend Erik Spigel (www.kagami.ca), who will be updating this page while Jon (and we) are in the hospital. We're told that we'll be there for four or five days. One of us will be dropping by home daily, so we will be checking those emails. We can't miss out on offers for Discount Toner or Herbal Viagra now, can we?
Tuesday June 26
We give Jon a haircut. We can't give him one in the next two months--can you imagine how itchy that would be?!!
Thursday June 21
Dr. Vaughan opens Jon's hood, checks his oil and sparkplugs. Clean bill of health.
Wednesday June 20
Laura banks blood for operation.
One of the problems with not pounding your little pods on the pavement all the time is that the hip joints are formed by doing just that. Add to that another curse of cerebral palsy: the delicate balance between reciprocating muscle groups is often out of balance. In Jon's case, his right thigh adductors (the muscle group that pulls your leg inwards) are stronger than the abductors (which pull outwards).
This combination of events means that although his left hip made it into joint, his right hip has not. The ball and the capsule of the right leg have drifted up along the pelvis. His right rear-end is noticeably distorted, and his right leg is shorter.
Jon is able to stand (when holding a counter or a CD cabinet, say), but in the past he was able to do ankle-stepping and other near-to-walking activities-- somewhat tight on the right side--because, it turns out, the ball isn't in the joint, it's being held tight by his thigh muscle. However, as he's grown over the past year, the muscle can't fake it anymore: It just isn't a socket joint.
The status quo will result in much wear and the destruction of the capsule and onset of arthritis within a few years. So there isn't much choice about intervention.
The surgery could last up to 5 hours. He'll recover in an A-frame body cast with the two legs held apart by a rod. If there's no bone graft, the cast will go up to his waist; if there is a graft it will go up to his chest. He will be in the body cast full-time for 4-5 weeks, and part-time for another month, during which time he isn't allowed to do any weight bearing on his leg.
There is an 80% chance of success with this kind of operation. Keep in mind that a successful operation has no bearing on whether he'll walk or even have any control of the leg in the future. Physiotherapists report success in some kids, but not in others. The surgeon seems confident that Jon'll lose little function.
So what's an osteotomy? The doctor will surgically break the upper femur, cut a wedge out and reattach the bone at an angle with a pin and screws, in order that the ball enters the socket at a better angle. Post-surgery, the leg will have a permanent bend/bulge and be a tad shorter. The capsule (the tissue surrounding the ball) will be folded in to be closer to the pelvis. Two or three of the four tendons connnecting the adductor muscle group (the ones doing too much pulling inwards) will be severed permanently. Apparently, this will still allow control and motion towards the centre.
During surgery a judgement call will be made as to whether the hip socket needs to be better defined, which will involve carving off some of his pelvis and grafting the piece of bone that came from his leg. Or as the doctor put it, "Fortunately, we have the wedge of bone from his femur". Sounds a whole lot less scary when you call it an acetabuloplasty. We think.