Monday, December 29, 2014

The Countdown Is On (And Dad Chimes In)

Well it's been a pretty hectic last couple weeks. I wanted Jodi (who was growing frustrated with each passing minute with no date) and Avery (who is understandably terrified and going through this on a level that I can't even begin to understand) to get their thoughts out while I took it all in and processed it.

I've been meaning to post and then kept putting it off not thinking I had anything worthwhile to say. It's a lot of worrying. Nothing I can do but reassure Avery that she's in great hands and that she's a strong girl who will handle this like a champ. Still, it's on my mind pretty much all the time. I distract myself with work and anything I can, but the second I let my guard down it's on my mind - and it's crushing me.

The biggest part is I can't do anything. It's hard to describe, this feeling of being the father. I didn't get to carry her in my womb for 8 1/4 months. I don't know what it's like to have that connection that mothers have with their children. The list of things I am clueless about is extensive.

I can be there for her, emotionally and to hold her hand or give her a hug, and that's what I plan on doing as much as I possibly can. I can also donate blood, though for much of today it looked like that wasn't going to happen. I got a voice mail today from Canadian Blood Services saying that due to a scheduling problem they wouldn't be able to get me in to provide a donation.

I'll be completely honest. I was really upset. This was to be the one thing that I could actually do for Avery and I was really looking forward to doing it. Knowing that if something happened during surgery and they needed blood that mine would be the first drops they would go to, well, it was an indescribable feeling, and with one voice mail that rug was pulled out from under me. Not quite devastating, but pretty darn close. The message said I should call them back, so I did, but I got voice mail. A few minutes later I got a call back from a coordinator saying that her manager would be calling me back to explain.

Well, that was the end of that until about 7:00 tonight. While doing the dishes I got a call from Canadian Blood Services. The manager informed me that they would be able to fit my donation into the schedule. January 8th with details to follow. What makes me feel really good about this is that the gentleman who called said that the problem with scheduling came to his attention at 1:00 and he's been working on re-jigging the schedules because, "We really wanted to make sure you were able to make this donation for your daughter." Faith in the system restored.

So, it seems like getting to a surgery date is the biggest hurdle because once you have a date boy howdy do things ever move like clockwork. Surgical consult within 3 weeks of getting the date. Blood donation two days after that. Pre-op booked for a week before the surgery and several weeks in advance... It's very encouraging, if not a bit overwhelming.

So there you have it. A ridiculously busy January on the horizon.

~ Dad

Tuesday, December 23, 2014

Pre-op confirmed. I guess we are doing this.

Pre-op is scheduled for January 13. Great Wolf Lodge is booked for January 15/16 and we are bringing 2 of Avery's friends (I am sure they are upset about the day off school to go to a waterpark). So it seems like everything is rolling out as it should, and once the holidays are over, the surgery will come quick (maybe faster than we are emotionally ready for, but there is nothing to be done about that).

We will workout the details with my parents for the week Avery will be in the hospital so that the Dude is well cared for and not left standing on the curb at school waiting for me to show up.

4 weeks today.

Wednesday, December 17, 2014

Aaaaahhhhhhhhhhhhh!😖 I just got back from yoga and found out that the surgery will happen on the twentieth of January. Six days earlier than we thought. I don't realy know what Im feeling, because I don't want to scream or cry. I cried a little at the start, but now I'm not sure. I guess I just want to process it, get it through my head that a bunch of people I don't know are gonna CUT A HOLE IN MY BACK WHILE I'M ASLEEP. Ok well now i want to scream, but at least we have a date. A definite date. No backing out now. I'm gonna get surgery. "Yah!".😱

            Princess pants👸

                       

We have a date!

After a torturous week of back and forth with the surgeons office and the hospital and Andrew (probably better for everyone this has been with Andrew and not me) we have a confirmed date for the surgery. January 20th. Like a month from now. I am very happy that the first big wait is done and we can now start some concrete planning, but now we have the big wait for the day to actually arrive. Between now and then we have an appointment with the surgeon to discuss the MRI and some surgery details, a meeting with the hospital appointed social worker, Andrew will donate 3 units of blood for use if necessary for Avery in the surgery, a pre-op day, and I promised an overnight to Great Wolf Lodge. I suppose I should also plan on a trip to the school to ensure things  are in place for her school work while she is recovering.  The next 33 days are going to be busy. As are the next 4 months while she is recovering.

All the positive thoughts in the world are welcome, in whatever format works for you that this all goes as planned and Avery is walking around the house before February arrives.

Thursday, December 11, 2014

A date! (Maybe)

We might have a date! January 26, 2015 if the hospital confirms. 7 weeks. This could all be happening in 7 weeks. And Andrew can direct donate as his blood and antibodies are a match - I can't because of the mad cow disease thing. So once we know if we are confirmed - hopefully by Monday, then things just start happening. Including a trip to great wolf lodge for just before, because why not.

7 weeks!

Tuesday, December 2, 2014

Opinion: Seconded. Motion: Carried.

Driving to Toronto sucks.

Today was the day that months of months of waiting finally paid off as we travelled to our much anticipated second opinion appointment with a surgeon at the Hospital for Sick Children ("Sick Kids") in Toronto.

As it turned out months and months of waiting culminated with hours and hours of waiting. Our appointment was for 10:00 and we were told to be there at 9:30. We got Jodi's dad to come over last night so we could leave early enough in the morning and he could take The Dude to school for 8:30. We left a smidge after 7:30 and got to Sick Kids at 9:38.

Did I mention that driving to Toronto sucks?

We arrive at the orthopaedic clinic at 9:40 and wait in line until 10:00. After a good 15 minutes to get registered and get all of the images copied over from CD we go off to x-ray, where we wait some more. From x-ray we go back to orthopaedics and we wait there, and wait, and wait, and wait. Sometime around 11:50 we get to go to a room! We wait there for another ten minutes or so before we are greeted by a very pleasant Nurse Practitioner named Kim (I believe it was Kim. Jodi noticed her name but I only got her title. All you psychology/sociology nerds can judge me later, I'm telling a story here).

Nurse Practitioner Kim was wonderful with Avery and put her through a barrage of tests, the whole time telling us that she had spoken with the surgeon and would be bringing him in shortly. At around 12:25 or so Kim left to get the surgeon and I ran out to put more money in the S.S. Minnow parking meter thingy (it only lets you pay in three hour tours).

The surgeon returned a few minutes after I got back and gave us the news that we knew was coming: the only way to fix Avery's curve is through surgery. This was not unexpected but I know that I found it reassuring nonetheless.

We did find out a few other things while we were there as well:
  • Her spine is probably only going to grow another couple centimetres so this is a good time to have the surgery (she's going to be all legs, just like her mother)
  • Spine angles in her range typically get 70-80% corrected (as opposed to only 50% correction if her angles were worse)
  • The doctor feels she has more flexibility than she was showing during her bend tests today (anxiety and having been sitting in a car and chairs all morning factors)
  • She's not likely going to need a brace after her surgery (they only brace afterwards in a select few cases) 
  • Her spine is also rotated (in addition to curved). Rotation of the spine for a curve this large is expected and they'd be worried if it didn't
And that was that. Since this was a second opinion appointment there wasn't any further paperwork required and she was discharged and off we went. To give you some of an idea of what Avery's spine looks like now I took this low-res screen shot off my laptop from her MRI on October 26:

The only thing fixing this curve is surgery. 

As you can see, there's no doubt about it. Because of the "S" curve in her spine she bends to one side better than she does the other. As Jodi eluded to in a previous post Avery and I were at yoga two weeks ago and Avery tried to do some wall work (yoga against a wall - it's much harder and gives you an indication of your true range of motion). Well, she was unable to do a posture that she previously had no trouble with. It was the first physical manifestation of her condition that she had experienced and it was in front of a whole bunch of people she didn't know. This brought on a wave of emotions and she broke down in the middle of class and I had to bring her home. As a parent it was incredibly hard for me to watch so I can only imagine how hard it was for her to experience. Anyway, she went back next week with my mother and they didn't do wall work and they both had a great time.

Up next: On Thursday Avery does her cardio-pulmonary baseline tests and afterwards she gets her blood and antibodies typed and I get my blood tested for compatibility.

~ Dad

P.S. Driving into Toronto sucks.