United Brachial Plexus Network, Inc.

I just received the o.k. from insurance to schedule Blake's capsulodesis and they will also pay for our travel to TCH, but they had a question...if he has the bicep extension and capsulodesis(they are considering this), his arm will be straight out to the side(Lisa T. also said it depends on who does the surgery as to how they are splinted), how do you do the airline flight? reserve 2 seats? I know this sounds like a stupid question, but modquad didn't make a big deal, we were just questioning this with arm out to the side before we make travel plans. Thanks!

Hi - we are going next week for this same surgery -

on my site in my capsulodesis surgery, I wrote up questions that I asked another mom whose child had this surgery...and I posted it there...I changed the name for anonymity sake.

www.injurednewborn.com/maia/homepage.html

look for the capsulodesis journal

hope this helps...

Maia is left OBPI...so we are sitting on the right side of the airplane - she will have the window seat and my husband (who is thin) will sit next to her and I will sit on the end (I am not thin). I hope it works out and in the worst case, if it doesn't - I'm sure they will find a way to accomodate her by giving me another seat somewhere or putting her in first class where the seats are wider. I'll let you know when we come back ok?

good luck,
francine

We're going to have the capsulodesis done on Nicole, but her arm won't be straight out to the side; it'll be out to the side to the elbow then straight up elbow to wrist/hand. We're just going to make sure her right side is by the window on the way back. I don't know what you would do for seating if it's straight out ot the side though. Hopefully, someone else will know and will reply. How old is Blake? I'm just asking to get an idea of how long his arm is.

Also, I have a question for you, what insurance co do you have? It is open season for us and I need to change insurance b/c the wonderful plan we've been with is discontinuing. I've never heard of another insur. co. paying for travel expenses. Thanks.

Oh, I just thought of one thing that might help with your travel plans. If you don't buy an extra (empty) seat and if you can arrange to return home on a Wednesday, there's a greater chance that there will be an empty seat on the plane b/c Wed is a lighter travel day. Will your insurance co. pay for the extra seat if it is needed? I hope it all works out for you (and it doesn't sound like a stupid ? at all!).

-Tina

Blake just turned 4 last month...our insurance is through my husbands union and I guess I wasn't clear on the travel part...in the State of IL, we have what is called the Department of Specialized Care for Children...they will pay for our airfare and hotel costs(wish I would have known about them for the other two trips:) ) Hope this answered your question and thanks for the feedback.

Katie had Dr. Nath and he puts them at 90 for the shoulder and then at 90 again for the elbow, thus not creating a problem with seating at all. And you do need to sit on the opposite side of the plane and if you sit next to him then you will be the one uncomfortable (if he goes straight out) rather than a stranger. But we experienced not quite full flights and they went to great exceptions to make sure Katie was not only comfortable but us as well, making several moves. And not one person complained, especially on the way back...

We too were told that it was a definite straight out to the side but the Dr. told us differently on clinic day. I know some of you won't be doing clinic (I have done that as well and may do it again the next time, prayers that it will be a good long while) and won't know until the morning of but that still gives you time to contact the airline and request seat changing. Continental actually put a "hold" on an empty seat for Katie and it couldn't be assigned until the flight was full. Then a non rev bumped in but they made him move so she could have her own seat.

Expect balance issues if your child is placed at 90/90. I know they balanced well with the mod but this one has more weight hanging out to the side and gets them kind of wobbly. And holding objects that are a little large for one hand. Even though Katie's R hand did not work well she could balance with it a little and assist with a cup a little. We have had to go back to small sippy cups with a lid and the ones with the hole in the middle.

The scar is small compared to others, about 1.5 inches and thin, right in the back of the shoulder where it meets the arm.

If those of you using car seats and or strollers are worried--don't they still work fine. We have several kinds and we just make sure we put the splinted arm in first, tilting her a bit and she slides right in. Clothes--larger!! Even though this splint resembles the SOL it is bulkier for some reason. She normally wears 12-18 months and we have her in stretchy 4t tops, pants are a little snugger as the splint hits her waist a bit and had to cut some of the arms out of some tops that weren't really realy stretchy as well as her coat. She likes it..thinks its neat or something and laughs like crazy and then doesn't want ot take it off.

She has adjusted well to the splint. Bathing is not as extreme now as you can tell she is losing some strength (like someone in a cast does) and doesn't pull as hard trying to get away. But it is difficult to get the splint back on. Stressful is the word.

Best of luck to all of you, each of your families will be in our thoughts and we will keep you updated, as we hope you do us.

Make sure to ask the Dr. to sign an order allowing the kids to go the outside playground and put it in the chart before surgery. They get frustrated at first trying to play with the toys they are used to and this helps relieve some tension. The playground is right outside of the builing where the old Radio Lollipop was located. katie went the day after surgery and went down the slide for the very first time..don't know if it was the pain meds or no little kids pressuring he to hurry.

The arm becomes a weapon..hope none of you sleep with your little ones. My husband had a black eye for a few days and I had a sore throat. She is uncomfortable in her crib and I guess we are going shopping this weekend for a new bed. I worry though as she hasn't lwarned how to go down steps yet and it is even worse now, harder going up too.

SOrry so long. prayers to all. christy, katie and kim

Hello,
My son had the bicept lengthening procedure last week with Dr. Shenaq. He was also supposed to have an ancillary release but that was not needed. Originally, he was suppose to be in a kind of SOL splint but since he only had the bicept lengthening done, he was put into an extension splint with the arm down at his side. This is much better. I did see other kids there who also had bicept lengthening with Dr. Nath and the girl was in a sol splint. I am not sure if she had any other surgery.

Although every child reacts differently, my son had Mod Quad at 20 months and primary. He really did not have much pain with those. He did have alot pain with the bicept. He is three and they gave him morphine at the hospital and sent us home with Tyneloy with coedine. We are five days post op and he still needs alittle of this. Best of luck......