A Picture and a Song

Today we travelled back down to McMaster Children's Hospital to visit Dr. Missiuna at his fracture clinic for our first post-discharge appointment. As with most visits to the hospital we spend more time finding parking and waiting than we do anything else. It's not normally a big deal but Pants was experiencing the worst pain she says she's felt since she came out of surgery. I suspect her latest dose of pain meds hadn't kicked in yet and the 45 minute journey in the car couldn't have been comfortable. At any rate, they got us into a room so she could lie down and she started to feel better.

Doctor Missiuna came in eventually and took the bandage off her back that was covering up her stitches. He said the wound looked great and that she should take a shower! He also said that she'd start to feel a lot better after about 3 weeks post surgery and that part time school could occur then, with a gradual approach to returning to full time school as her pain and fatigue levels allow. 

We asked about physio and he said that would start at about 3 months post op. We asked about her body movement and how long it would be before she started to move around more naturally and get used to her new body. He said that at 6-12 weeks they start to feel more comfortable, and that she's still ahead of the curve. 

Then, he showed us what we've been eager to see since she got out of surgery. The latest set of x-rays! I asked for a CD of the x-rays from the hospital and they (reluctantly) agreed so I've taken the liberty of including a side-by-side before-and-after view for your enjoyment. Again, I couldn't get the scaling quite right but you get the idea. All I can say is holy smokes, that's a lot of hardware. 

The two images on the left pretty much say it all. She's going to have to get used to having so much of her spine rigid, but look at it! That's one good looking posture. No more deformation. No more risk of damage to her lungs or other internal organs. 

On the way home we stopped to get some Subway and left Pants in the car. As I left she said, "Don't take too long. I'm probably worth a lot of money with all this metal in me." I love that she's still got her sense of humour. 

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Before this all went down I was talking to my friend and former band mate Jim. I asked him if he thought he could write a song for Pants. She absolutely loves music, and Jim's such a compassionate person (and a talented musician to boot), I figured this was a great idea. Well, today Jim and his band Woot Suit Riot released a song that I can only describe as amazing. Watching the video brought a tear to my eye and as soon as Pants wakes up from her nap I'm going to show it to her. She's heard a rough cut that was missing the harmonies but she was high as a kite at the time so it'll be nice for her to listen to it and see the video with her head less cloudy. 

Here it is, in all it's awesomeness. Thank you, Jim and Woot Suit Riot, for doing this. It's an absolutely wonderful gesture and an absolutely wonderful song for an absolutely wonderful girl who we are absolutely proud to call our daughter.

"Bend" - Woot Suit Riot

~ Dad

It's In You To Give

I want to talk about what happened last week and the profound impact it's had on me, and how I feel about charity and giving.

A few months ago a Facebook friend of ours had to have surgery. Brain surgery. Real dangerous stuff. He's the real estate agent who drove us around for two days back in 2009 and showed us almost 30 homes and ultimately helped us buy the house we have lived in for the past 5 years. He even did the final walk through so my wife and I wouldn't have to fly in from Ottawa to do it. We've stayed in touch on Facebook since then and followed the changes in his life, as he and his wife had their first child and then proudly announced earlier this year that another one was on the way.

During his surgery he almost died. He started to bleed and wouldn't stop. There was something like a 1% chance of this happening and it did. It took blood donations from 60 people to save his life. They pumped 12 litres of blood into him to keep him alive. 12 litres. His body only holds 4. He came out of surgery without a single drop of the blood he went in with - 3 times over.

Healing and grateful to be alive he decided to give a little back and hold a blood drive down at the local Canadian Blood Services location in Waterloo and he asked all his friends on Facebook if they would consider donating.

I had low blood iron for the longest time and then was on some pretty fun medications after that and had never donated before. Being med free and with a healthy hemoglobin level right now the only thing stopping me was a healthy fear of needles and queasiness at the sight of blood, which seemed like really lame-ass excuses. So I booked my first ever appointment to donate blood for Tuesday of last week.

Then, in what can only be described as a karmic twist of the Universe, the Monday before my blood donation appointment Jodi and I found out that Avery does not weigh enough to bank her own blood before her surgery. You see, she has severe scoliosis and needs to have spinal surgery in the new year to have metal rods cemented and screwed into her spine to keep it straight. It's a 10 hour surgery and if not everything goes as planned she'll need blood. Better it's her own than someone else's too. Only now that was not possible.

Jodi cannot donate because of some funky rule that prohibits donations from people who lived in France for more than 3 months during certain years. Seeing as she lived there for a year during one of those years she's ineligible (something about mad cow disease and not being able to test for it until after you're dead). I will be tested for compatibility (blood type, antibodies, etc...) and if I'm a match I will provide a directed donation to have on hand for Avery's surgery. I'll only be able to donate a couple litres though. A worst case scenario would see her needing more than what I can offer.

That means there'll be blood on hand from the blood bank. I really hope none of it will be needed, but it's awfully reassuring that it's there if it is in fact needed.

So on Tuesday I went in and donated blood for the first time. It was almost completely painless, everyone was very supportive, and I got to have juice and cookies afterwards. My friend was even there talking with all the people donating and thanking them. If I'm being completely honest, I felt really good about it. The best way I can describe it was that I felt like I was making an immediate and profound impact on somebody's life. I went home afterwards proudly sporting my "First Time Donor" pin and feeling great (though getting out of bed the next morning was a challenge. I was really tired!)

I've been telling people this story ever since and am encouraging everyone to go find out if they are able to give blood, and if they are to please donate. It makes a difference. It saved my friend's life and could very well save Avery's.

~ Dad

Progress!

News! Results! And no, I wouldn't rip anyone's head off :p

So first thing, my dad was a huge help spending the night so he could take the dude to school, then he hung out here 'just in case the school called while we were away' which ended up being until nearly noon.

So on to McMaster. We arrived minutes before 8:00 (after getting lost. Perhaps we wil use the gps next time) to wait to get Pants' X-ray requisition - the receptionist let us in around 8:10 (I was totally pacing) and I budded in front of a brand new family there with their 5 day old baby. Jerk. I apologized - I was hoping to just grab the req and run over to X-ray, but we got fully checked in. Next time I will be more patient. On to X-ray, which was pretty uneventful and quick, then back to the clinic and we hardly sat down before we got called back ( I think I prefer these 8:30 am appointments for that, though the inconvenience with Dude needs to be balanced by my joy of not having to hang out in a hospital waiting room). We had a student doctor and a temperamental computer, so that stay was short, before we got sent back over for more X-rays in a bent over pose. We were back in the clinic and in front of the X-rays moments after returning to the clinic. There appeared to be progression of the curve, but the doctor didn't want to tell me  us what the number was (but I saw it written down as ~60) which is roughly 18 degrees more than the first X-ray - without the 1 cm wood block correction since March.

This appointment I felt like I was getting more information - things like: surgery will be in January or February. She needs to have an MRI. Ok, maybe my head was going to pop off without more information. The doctor even suggested we visit his medical office, you know, just to show our faces - so we did.  There we got a checklist with 6 things that need to happen before surgery. We told them that we would appreciate grouped appointments of possible so as to limit our travel. We were even offered paperwork for Ronald McDonald house, but I think we'll just do the drive and save that space for people who really need it.

And if that wasn't enough, by the time I was leaving the office tonight, we already had her MRI confirmed for this Sunday at 9:15 am - I mean wow! She doesn't even play professional sports.

So there. I feel like I know a little better what is coming and when it is coming. Avery seems ok, if not pleased that she will make it through Christmas before surgery - and with this schedule, should be mostly healed up by the time summer vacation rolls around.

We're in the 21st Century, Right?

It's not like we're just into the 21st century or anything. We're almost a full fourteen years into it and in trying to get Avery a second opinion with one of the most technologically advanced paediatric hospitals in the country what do we receive? A letter. Mailed to us with a stamp on it and everything.

Image courtesy Canada Post.

In spite of the fact that I had left specific instructions with an actual human that I would like a phone call so that we can avoid any back and forth about times that work we get this letter. As Jodi mentioned, of course it's for one of the few times when she simply cannot make it. There wasn't many, but this was one of them.

So I call them back at the number provided in my mimeographed form letter and get voice mail. I left a message. The next day I call back again and have to leave another message. That afternoon I get a call back! It's someone asking about why I called and how they could help me. Strange, I was clear in my message I wanted to see if we could reschedule the appointment. "Oh! If you want to change your appointment you have to talk to [this other lady]! Let me transfer you." Voice mail. *sigh*

Image courtesy http://www.rjrprops.com/

I leave a message. No response for the remainder of the day but lo and behold they called me back this morning! Turns out they can change the appointment but the doctor is only in once a week for this sort of thing and they're booked right up for a while. December 2nd is the earliest next appointment. Done. Good. Now let's move on, shall we?

Meeting with Avery's surgeon on Monday. Going to go over some things with her on the website he recommended and see if she has any questions. I know I have a big list of them piling up. I'm sure you'll see a few updates from us Monday afternoon / evening.

~ Dad