My 4 year old daughter is having surgery on the 18th. Dr Kozin will do tendon transfer. She has damage at C5 and C6.
My husband is taking her for the surgery. I have benefited from reading the boards. I have a few shirts modified for her cast.
I have a couple of questions for those that have btdt. How large is the incision usually? Will the cast cover the incision?
They will be flying home (3.5 hours) after she is released.
Any tips? Any important information that you have to share would be greatly appreciated. I am a worrier . I hate that I can't go with them but we have 4 other children. I will be the PT week parent. Anyway thanks in advance.
Injury Description, Date, extent, surgical intervention etc: LOBPI no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth 1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
No advice, but I wanted to wish your daughter much luck and a speedy recovery.
The only thing I can think of would be to make sure she is medicated for pain during the flight. I know when I had my tendon transfer at age 14, I was in pain driving home.. and I live 15 min from the Shriners. And it was also 3 days after I had surgery... I can't imagine 3.5 hrs after!
Injury Description, Date, extent, surgical intervention etc: LOBPI no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth 1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Good luck to your daughter. My son had the ACR surgery with Dr Kozin in October, he didn't do the tendon transfers, they are hoping he can get by without them, but the cast is very similar. He was 11 months when they did the surgery, we stayed an extra night at the Ronald McDonald house, but he was actually doing really well the day he was released. I stayed the extra day because we were worried that if he didn't get released as scheduled we'd have to pay to change the flight. What worked really well for him to wear over the cast was zip up hoodies, a couple sizes to big. We never even attempted to put on a shirt over his head while in the cast. Your daughter's cast will have a bar that goes from the chest to the arm, so maybe 3 sizes to big would be best. My son's cast didn't have the bar since he's so small. If you want to see pics, I have lots of them posted on our myspace page, myspace.com/kcdad3x. Feel free to send me a message if you have any other questions. I hope you are planning on staying at the Ronald McDonald House in Camden when you go for the therapy week. They are great there, I got to know several other families while there, there were 3 other families staying there the week I was there with BPI kids. Linda set booked it for us when we were out there for the surgery. We are staying there again when we go back in February for my son's 4 month check.
I would suggest medicating one hour before the flight home and making sure that she has a plastic zip lock bag with extra clothing for both your daughter and your husband and baby wipes, just in case she vomits on the airplane. Also - telling the flight attendant that she is post surgery and they might be more helpful.
(just noticed that I wrote "he" and "son" everywhere - I am so sorry!! I changed it... yeeks --- freaky brain!)
I agree with the pain medicine a hour before take off. Also when we flew back they wanted to take a sample of Kayla's splint and test it. I had a letter luckily from the doctor that explained it could not be removed or touched for any reason. It was close after 9/11 though so I am sure that played a role in it.
My son had the tendon transfer last year. The cast doesn't cover the scar. It is about 3 to 4 inches and is mostly in the armpit area. I hate the Philly airport. Security takes forever. Luckily for us, Brendan was crying so a TSA agent saw him in his cast and took us to the front of the line. They will swipe his cast with gauze and test it for explosive material ( I assume that is what they tested him for.) I would definitely give a dose of meds before getting on the plane. We didn't get our prescription filled before we left Philly and that was a big mistake. We waited in security for almost 45 minutes, our flight was delayed and we had a 2 hr flight home. What a long night. I did ask if we could board the flight first and the gate attendant was HORRIBLE!! She was so rude so I had her call her supervisor. Long story short, we were able to get Brendan on the plane first. I just didn't want anyone bumping into him, or for him to hit his arm on anything. I hope this helps. Good luck Monday!
Our daughter did great. She hasn't let the cast slow her down at all. My husband handled the flight and hospital stay just fine. The worst thing that happened is they were delayed getting home because of airline/weather issues. The had to spend the night in Cincinnati.
We'll be going back on the 19th to have the cast removed.
Any tips on getting a room at the Ronald McDonald house for that week stay? I will be there this time and would prefer to stay closer to the hospital.
. I hate that I can't go with them but we have 4 other children. I will be the PT week parent. Anyway thanks in advance.
