United Brachial Plexus Network, Inc.

My son will be having the mod quad surgery on the 28th of this month at TCH. He will have to be in the statue of liberty splint for 6-8 weeks and I was wondering what to expect from this surgery. I was also wondering if there will be any difficulties in putting him in and out of his car seat and also with getting him dressed. Any suggestions and advice is very much appreciated! Thank you!

Welllll....where do I begin?

Here's a good place.... my web site..
http://www.injurednewborn.com/maia/homepage.html

there is a mod quad section that has a lot of good info in there.

Car Seat: if you can get the straps to loosen up about 3-4 inches that should do it....and Tina made me aware of recently that certain car seats do this loosening tightening from the front - so that would be a plus - you could loosen to get your child in and tighten right after.

About clothes: we always went about 2 or more sizes larger and just used t-shirts. My daughter also has issues with skin breakdown (she has eczema) so we also had to use cotton undershirts underneath the splint.

We put the t-shirt on the splint arm first, then put in the other arm, then over the head. This is how Maia is being taught to dress herself normally anyway. Taking clothes off - like a coat - we unzip and take out the unaffected arm first, then the splint arm. Maia normally wears a size 6 and her coat is now a size 10-12.

Thrift stores are a good place to stock up on larger sized items for this short term experience...or you can buy new clothes and then just store them until your son is older and fits back into them.

What to expect from the surgery - is this in terms of results? Well the results vary from each child and this of course all depends on the child themselves, on teh nature of their injuries, on the nature of their contractures and add that all together with healing rate, recovery rate, what rehab therapy does...it's so complicated. So the best thing to do is just take it one day at a time - follow the therapy protocols and you will see the changes and then be able to give us an update.

Some people think that it's miraculous (we do!) - some people got different results then they expected - some didn't see much result but you see you can't really compare your child to any other child.

Having a child in a splint for 6-8 weeks 24/7 and then another 6-8 weeks at nighttime is stressful (on the parents) I kid you not. Some kids just continue on as if almost nothing has happened and some kids are really harrassed by it. I think it depends on the age of the child, too. I know that my daughter is having a much different experience with the splint she is now in(capsulodesis) then the splint she had for mod quad - two years later made a huge difference (not saying good or bad, just very different).

We will keep you in our thoughts and prayers for the 28th. Get good rest between now and then, too.

big hugs,
francine

Another thought is going out in public with the splint. We got a lot of dirty looks and comments thinking we somehow abused our child. That to me was the biggest frustration. People always came up and asked how our baby broke her arm or how did she fall. So, try to have some awareness stuff ready and count to 10.
When the splint came off for the first time and we were supposed to bring the arm down, it was very painful for our daughter. It actually took about a week before she could have it off all day long and put it back on at night. So far we are seeing postive results. She doesn't have a LOT of new movement yet, except for some new supination and she can now raise her arm above her head. I feel it was worth it to us to have the surgery. Hope this helps.

I'm sorry Nicole but I have to say something here... you said, "She doesn't have a LOT of new movement yet, except for some new supination and she can now raise her arm above her head."

I gotta tell you...supination and raising her arm above her head is BIG STUFF!!!!! hehehehe I'm laughing but if Maia were ever to supinate you'd see me on the rooftop doing big 'ole tap dance!!! (can you visualize that??)

Celebrate even what you think are the little things for they are all miracles.

big hugs,
francine

Hello, We just got back from Texas after having the mod quad. Let me tell you, McKenzie is 18 mos old and this splint/surgery has not slowed her one bit. SHe was up and running the day after surgery. We got tshirts about 2-3 sizes bigger than she normally wears and I bought her a coat that has roomy arms in a size 5, she normally wears 24 mos-2T. Please feel free to email with any questions you might have. We altered her car seat a little, but I am sure we could have done it with the straps that adjust in the front. I couldn't believe how little she pays attention to the splint, if it were me I would probably still be laying in bed crying. Good luck to you, again, feel free to email me.

Man what we would do for a wrist let alone suppination and over the head! Celebrate girl and then keep praying for the rest!

Sorry, I guess she lost a lot of movement for a while after surgery and so now she is kind of just gaining back what she had prior to surgery, her new supination is like only being able to hold a cup with handles or a bottle. She still can't turn it palm up or anything. I am extremely excited about what she does have though. I guess I try not to get my hopes up because I don't really know what she will gain from the mod quad. What if that is it? Do I have to wait until she plateau's again before knowing how much good it did? I'm sorry if I sounded insensitive. I realize there are many of you who have severe injuries and would give anything for a degree of new movement. So, I'm sorry.

Clarissa,
Have a Car Seat that harness straps losen in the front of the seat are a must... so you can retighten after your child is in the seat. How old is your son and what type of seat are you currently using? I haven't personally had to deal with car seats and splints but I am a car seat educator and I would love to help you if I can!
Kristie

Good luck to you on the 28th!!

Missy

When Juliana had the m/q we had a car seat with a 5 point harness. I hated looping her into it. And if she fell asleep while in it, I couldn't just lift her out--I had to turn her sort of sideways. Of course she woke up!! I found a car seat that is great! It is very hard to find, however, because I am not sure Century is even still making them. It is called the Century T2000. It has a "T" shield, instead of the 5 point harness. It just pulls down over the head and locks between the legs. Though the pattern is awful (oh the hours I spent debating the patterns for that other carseat for my last child.....) I continue to use it because it is so simple to use. I found mine at KMart. They had 2 and I thought of buying the other one also. LOL Go look for it. Perhaps they have one hanging around.