SMS Discussion

Bens mom Nancy (Glenn & Nancy) · Posted: 04/21/10 Post subject: surgery date

Just thought we would let everyone know that we have a confirmed date for Ben's scoliosis surgery... May 12, 2010 ... hope everything goes okay & they don't change or delay it ... finding that I am a little anxious, excited yet scared to death.
Good luck to all - Nancy

gpmhajh (-=hidden=-) · Posted: 04/30/10 Post subject:

Nancy, I hope everything goes well for you and Ben. I'm sure you have so many mixed feelings. Definitely keep us updated on how everything goes. You will both be in my prayers, especially around May 12. Gretchen, mother of Joey,SMS 6, and NT Aimee, Heidi and Maria, age 8 1/2
_________________
Gretchen,
mother of Joey (5)(SMS)and triplet girls ( Cool

Bens mom Nancy (Glenn & Nancy) · Posted: 04/30/10 Post subject:

Hello Gretchen, thank you - we have never had to deal with anything like this before...I definitely am scared, never had one of my kids go thru anything surgical so really feeling for Ben!
I was thinking it is important to share as scoliosis is not uncommon & very little info out there of a child with SMS having scoliosis & going thru surgery...
Anyway we will let you know how they handle a young SMS patient after surgery... in our neck of the woods anyway.
Talk to you soon --- Nancy

Bens mom Nancy (Glenn & Nancy) · Posted: 05/14/10 Post subject: surgery delayed/rescheduled

surgery delayed... no pediatric ICU beds.
They have rescheuled Ben for May 19th.
All we can do is hope & pray all kids are safe & a bed becomes available by that morning.

Must say it was pretty disappointing = having gotten so built up to accept this surgery then having to mentally start over again... but we will do it as many times as it takes, for the love of our Benny>
Nancy

Bens mom Nancy (Glenn & Nancy) · Posted: 08/05/10 Post subject:

Update... sorry never put any update in since surgery, everything went well.
There was no bed available the morning (May 19) again but became free in the first hour at the hospital (thank heavens) - I can honestly say when the nurse came out to say it was a go, I got a super chill right down my spine.
The surgery took almost 13 hours - the doctors did a great job & were very tired...
Ben went in with 110 degrees curve & was corrected to about 65, his little body wouldn't allow anymore even though it was possible, his spinal cord couldn't take it. Minor complication with one lung but was corrected immediately to best of our knowledge.
They checked his heart the following morning to make sure he didn't have any hyper-tension, damage or stress... all looked well.
within the first 24 hours Ben had his morphine turned down low, breathing tube removed, steroids stopped, all vitals were good.
He was in I.C.U. for just over a day, then was moved to the I.C.E ward for a few days, then into a normal room... I really can't believe some parents just leave their kids in the hospital alone but that might just be me Question

He had his chest tube out on day 6 (would have been sooner but we had a long weekend) Once the tube was out he wanted out of bed... he did all his therapy in 2 days because his big sister kept saying if you do it we can go home, well there was no stopping him then LOL
We were home on day 8 with Ben.. he was doing great, the nurses at the University of Alberta Stollery Hospital are absolutely the most wonderful crew... they made our 8 day stay bearable!
I hope everyone who has to go thru this ordeal has a good one. Ben is walking & breathing so much better now, I am so glad he will never get a worse curve or lungs. He is an absolute tough little guy Smile

We also had our first post-op app't & the dr. was very happy with Ben's progress. xrays looked good, will see him again around Nov.