Day 2 in the books and we take some questions

Jodi has made her way home after a short visit from The Dude and grandpa. Pants wasn't too alert but did manage a couple smiles. Dr. Missiuna came by when I was down at dinner and said that she was still ahead of where they expected her to be. That's good news but she's still in a lot of discomfort and just wants to go home.

She's due for vitals check and more pain meds at 8. The nurses will be by at 12, 4, and 8 and Jodi will be back sometime before 10am. Hopefully we can get her up tomorrow as she only spent about an hour sitting upright today.

The night nurse just came in and discovered that her left arm was experiencing infiltration. That's where the IV leaks into the arm instead of the vein. It was all swollen and tight. Also, not all her meds from the pump were getting into her system. The nurse switched the lines to her right arm and took out the IV from the left arm completely and Pants's mood improved immediately. Hopefully at some point tonight they'll take out her main line - the one that goes into her neck. Fewer tubes is good news.

Now for some questions from the press gallery:

- Will they ever remove the hardware in her spine?
- Will she still grow? If so, do they adjust the hardware?

The short answers are "no", "yes", "no". 

It's much too risky to have to open her up again and unscrew the rods. It's a terribly invasive surgery that involves the spinal column so once they're done with the installation they leave it there forever. There are cases where they have been removed but this is very rare. As for growth, she is growing in two places: her legs (femurs) and her spine. Fortunately, due to her age and physical development she does not have too much spinal growth remaining (the second opinion doc at Sick Kids estimated a couple centimetres). 

The area that's fused is 14 vertebrae and there will not be any further growth in that area. As such, the hardware will stay the way it is and her vertebrae will fuse together and that's the spine she'll have for the rest of her days. I gotta tell you though, from what I've seen to this point it's mighty fine looking. Such an improvement over the crooked, asymmetrical one she had before! Now, it's possible she may realize some growth from the remaining vertebrae but it will not be significant. She will still grow in her legs though so she's not done getting taller quite yet.

If anyone has any other questions just leave a comment or send us a message on Facebook or via email (potatochipmath at gmail dot com).

~ Dad

Tales From The Ward

So Jodi sent me home yesterday afternoon. I got home about 30 seconds before grandpa came home with The Dude and he was thrilled to see me. Unfortunately I was beyond exhausted and only got to spend a few minutes with him before crashing. I managed to get up and go with him to bowling practice, so that was nice.

After a pretty good sleep I checked in with Jodi to see how our super star princess was doing. She slept but nurses come in every couple hours to poke and prod so her sleep is fragmented. Jodi didn't sleep much as there's alarms that go off constantly and just a lot of activity on the floor in general. I'm back at the hospital now and Dude is coming to visit with grandpa after school. Jodi will go back with him and I'll be staying here. 

They stopped her background pain meds (a constant stream to supplement the morphine pump) so it's just the pump now. I don't see her hammering the pump button all the time; it's usually lit for a while before she hits it, so that's good.

She just rolled over onto her side, mostly on her own. I can tell she's not super comfortable but she's calm and relaxing reasonably well so that's good. Just waiting for another visit from the physiotherapist and the nurse (on her regular rotation).

Not a very exciting update, but honestly, I'd be perfectly okay with only posting ones like these from now on. 

~ Dad

post - operative day 2 update

Avery has taken up court in the Pediatric wing and seems to be settling in. Day 2 pain is a little higher than day 1, but they have also taken off the continuous release med, so for pain she is relying on her pump.

The physiotherapist had her sitting in a chair, but she was done with that after about an hour and honestly looked uncomfortable the whole time. We figure her organs are settling in their new and proper homes, and that is making her not feel so great. The nurse cleared her for a Jolly Rancher hard candy, so that has been her primary sustenance. The kitchen offered her some toast and peanut butter - she was excited  about that, and did manage to eat almost 1/3 of the piece when it came.

Today she doesn't want to be up, preferring to recline at about 20°. The tape on her chest is making her itchy, but not the worst. They removed one of her IV lines this morning, and we are hopeful to have either the central line in her neck or the remaining inactive line in her right hand removed today too.

Andrew has decided that he wants to stay tonight - i really think she would be fine on her own, but maybe Andrew needs this for him - but after a night of constant alarms and nurses, he may decide that we are better for her when we are rested.

I noted that her right leg, which was sitting about 1 cm shorter than the left before surgery, appeared even shorter when I looked at her lying in bed, but  admittedly she wasn't lying straight, so hopefully it was just how she was positioned. I saw the surgical resident who aided in the surgery and he told me he was fairly certain I was mistaken, but until she is steady enough for x - rays,  I will just have to trust him.

I stepped outside for a few minutes this morning, realising i hadn't breathed fresh air since early Tuesday. Hopefully Avery will be a little more mobile tomorrow - or they will allow her to go in a wheelchair so we can walk around a little.
Oh, Avery's question for today was how much do the rods weigh? Surgical resident figured less than a pound.