Surgery this week

Those of you who are new to this blog...it is primarily a medical blog for Ellie...meaning I only post when there is something medical going on with her. If you don't see any posts for a while...it usually means she is happy and healthy and hospital-free.

This upcoming Wed (Aug 15) she is having surgery at Primary Children's. She is having rods put along her spine.

It is actually 1 rod, that curves over at the top, so it looks like there are 2 rods (1 on each side of her spine).

She has scoliosis (her spine curves). It started a few years ago. She has been wearing a back brace anytime she sits up for a few years now also. She started wearing the brace before she started having scoliosis. The brace was never going to keep the scoliosis from getting worse...but it helped slow it down and it really helped with positioning her in her wheelchair and what-not. The back brace is a pain. It just adds an extra step to transferring her in and out of the wheelchair. Yes, it helps and yes we would do it again if we had it to do over...but it still is a pain. A lot of times instead of gong through the work of bringing her in to dinner (she doesn't eat orally anyway) it is just easier to leave her on the couch. Would we still leave her even if she didn't have the back brace...maybe...but it doesn't help.

Laying flat on your back is the worst thing you can do if you are prone to pnemonia, so this is something we have to be conscious of and sit her up even if we don't feel like it.

So for a little back story. We have been seeing Dr. Santora at Shriners since Ellie was 2 or 3 years old. He has done one surgery on her. Foot surgery done at Primary Childrens. (Even though we see him at Shriners, he has privileges at Primary's and Primary's is better equipped to deal with complicated kids like Ellie.

Last summer (2011) I tried talking Dr. Santora into putting rods along her spine. I wanted to get it done. The reasons I wanted to get it done were...

#1) I have talked to other parents that their kiddos have had the surgery and they say that it makes transferring them a lot easier (it is like lifting up a 50 pound kid that can support their own weight compared to lifting up a 50 pound sack of potatoes).

#2) Easier as far as not putting on and taking off brace

#3) She never got pnemonias before she starting having scoliosis...related? Possibly. Not likely, but possibly

#4) Get it done in the summer rather than during the school year and have to miss school

#5) It stops or slows your growth...which is a good thing

He didn't want to do it last summer because

#1) She was only 9 and he doesn't like to do it until they are 10 if he can help it because it fuses their ribcage and won't allow their lungs to grow any larger (or something like that)

#2) He doesn't like to do it unless the curve is over a 60 degree curve (or something like that...I can't remember) And in 2011 she was not quite there.

So this summer I was all set up with my arguments to talk him in to it again. He thought it would be fine now (in 2012)...but he doesn't have privileges at Primary's anymore. He is a little older and getting closer to retirement (is my guess). Well I'm not having it don'e at Shriners that's for sure and I don't think he was comfortable doing it at Shriners either.

After he did her foot surgery, they sedated her in the OR at Shriners a week later to change the cast and they didn't even have a glucose monitor. That made me really skeptical, if you don't have a glucose monitor, what else don't you have. So I vowed never to do surgeries at Shriners again.

Shriners is a wonderful facility with wonderful doctors and wonderful programs and I still go to them...but I will not do surgery there.

So, back to the current story. So since Dr. Santora doesn't go to Primary's anymore I had to get a new Dr. So Dr. Santora recommended Dr. Josh Klatt at Primary's. I also had a 2 other follow-up appts with Dr. Gooch (Rehab-baclofen pump-botox) and Dr. Murphy (special care). They both said Dr. Klatt was great.

So we set up an appt with Dr. Klatt. Of course we had to wait 2-3 months to get in. But that is standard at Primary's. But then by the time we got in, the summer was almost over (it was early July).

Dr Klatt thought surgery sounded good. (Ellie was now at an 80 degree curve). So then I'm figuring we're going to have to wait another 2-3 months to get onto the surgery schedule. Dr. Klatt squeezed us in a month later (so on Aug 15). It was great.

Another reason Dr. Klatt thought she was a good candidate was because we have been doing the estrogen to send her into puberty...so her growth plates are at a 13.5 year old and girls growth plates stop growing at 14 typically. So she doesn't have a lot more growth. This also means that they won't have to do the veptr rods (rods that can grow larger with the child...but they have to go in for surgery every 6 months.)

Our friend's son has the veptr and he has had A LOT of problems with them (infection and what not). So I really didn't want that kind if possible.

With the regular kind, that Ellie is getting...the rod flares out at the bottom and they drill into your pelvis and insert the rods to hold them in place. Then they take wires and wire around the rod and around each vertibrae (skipping the portion where the baclofen pump tubing goes into the spinal fluid.)

It is an incision from her head/neck all the way down to her pelvis.

I am slightly nervous for this surgery because...

#1) Huge incision

#2) they plan on a blood transfusion (which sounds scary...lot of blood lost)

#3) 4.5-5 hour surgery (most of her surgeries are only 1.5-2.5 hours)

#4) First night is in ICU no matter what (that sounds scary)

The things reassuring me are

#1) It is not a new type of surgery, it has been done for a long time

#2) I LOVED Dr. Klatt...he was awesome (I have only met him once, but he was great)

#3) It will be at Primary's, they're the best!

#4) It's not the VEPTR

#5) It is not her first surgery

So, first night in ICU. Then 5-7 days inpatient. And a month of restricted activity (no school). So she will miss the first few weeks of school. Not ideal...but it's what we have. She should be able to sit up on day 2 or 3. People that can walk can walk on day 4 or 5. So we have been teasing that she will be able to walk on day 5. (Yeah...as parents you can make jokes like that).

She will no longer be able to bend along her spine. She will be able to bend at the hips and at the head...but not in between. She will be taller.

I have arranged for IHC wheelchair shop to come service her wheelchair while we are inpatient (tighten brakes, oil, clean, etc...normal yearly maintenance that you are supposed to do that I have never done). And then another day once she can sit up to come and adjust it for her, since she will be taller.

We are also trying to arrange to get the van fixed while she is inpatient, since we won't be needing it for a week.

Since she will need blood, we have to have it drawn the day before (this is new, we have never had to do this before), so we get to make an extra trip tomorrow to SLC. Lucky us!

We would love your thoughts and prayers on Wednesday and leading up to this surgery for the Dr. and nurses, Ellie and our family.

Look for updates on Wed and throughout the upcoming days and weeks.