United Brachial Plexus Network, Inc.

Well, we've put this off long enough. Our 4yr old sweetie Josephine is having the mod-quad done next Monday. We loved Maia's site, fantastic resource. Now we've come here looking for any advice and experiences you can offer. Specifically, if you could have done things differently before, during and immediately after the surgery, what would it have been?

Some background: Josie has minor to moderate BPI in her left arm, complete hand and finger use at birth, rotation is good but she cannot raise arm above 100-110 degrees and cant touch her bottom. Elbow is bent slightly and her scapula has very noticeable winging. The whole area around the scapula is very weak and therapy/swimming/play seems to do nothing to help it. We did the night e-stim for a year and a half, 3 botox injections, she's in swimming, ballet and gymnastics. Been to TCH 4 times before and each time its a different prognosis, whether or not to do the mod-quad. The last visit in Sept, they said she is regressing and the surgery is indicated only to halt the regression. We were heartbroken, esp since the at the previous visit the year before they said she was doing great and she would continue to recover! Anyone have a child with a similar background?

Sorry we haven't posted sooner, we've lurked off and on here for years. Hopefully we can learn something from your experiences in the few days that are left. Keep us and the others due for surgery next week in your prayers. Thanks!!

Steve and Deborah

Hi, we will be at TCH Monday, the 28th for capsulodesis for my son, Blake. He is also 4. I guess you could say his injury was moderate to severe and this is our 3rd surgery. He had modquad 2yrs ago(tomorrow) and significantly improved from it, I'm glad he did it. It sounds like your little girl is doing good. I know it is hard to find out that you need surgery, we were told at modquad that he wouldn't need anymore and here we are again. Blake couldn't move his arm any higher than chest level and can now wash his hair, put his hand behind his head(it is hard, but he can if he tries) tug on his ears, and somewhat feed himself. He would have a better time doing most of this if he could supinate, but maybe in due time. He is having his shoulder dislocation corrected. Maybe our families could meet while we are there. GOOD LUCK! I wish your daughter a speedy recovery!!

Crystal S.

Got my days mixed up, the surgery is on the 28th.

Thanks for the reply Crystal. Its great to hear positive stories. We'll look for you down there next week.

Steve - if I could go back and change our experience for Mod Quad it would include this:

(1) having a PSA pump for morphine for Maia in recovery room and post surgery - we did for capsulodesis surgery and it was a Godsend. She had terrible pain with mod quad. If only I knew it was an option back then.

(2) making sure we had extra strapping- which is now no longer an issue because they do this automatically now

(3) make sure they moleskin the ENTIRE edge of the WHOLE splint. Every edge becomes a lethal weapon because there are holes and whenyou cut through a hole it leaves ragged edges. Insisting upon it!

(4) getting the wagon and getting Maia out of her room more so that she might have been able to transcend the pain easier... taking advantage of the many children's services there like child life specialists - the playrooms, etc.

if I think of anything else I'll let you know,
in the meantime I will keep you guys in my prayers. I hope that all goes well and that your sweetypie recovers fast!

-francine

ps - I updated the What To Expect On The Day of Surgery page.... and the TCH page.....

I agree with all that Francine already wrote. You may want to bring your family's e-mail addresses with you and use the computer in the hospital library to update them. I know my friends and family were just waiting on pins and needles to hear from me but it would be impossible to call everyone. Much easier to send one e-mail out to all...It's been 2 years since my son had it so I'm not sure they still have the library...I bet they do.
Also, we would do the surgery again because it helped my son so much but he did have problems with the drainage pump and the pain it caused. I think the morphine pump may have helped with that but we weren't offered it(just injections).
It would be much easier to not have to deal with any of this at all but since we must we do and I think you will be happy with the results of the surgery. Just keep in mind it's not a miracle cure but it will give her more control.
When we were there the other little kids did much better than my son. He was 10 so maybe the pain factor was worse???? I don't know...I think some people just manage pain better than others. The other kids were really running up and down the hallways the next day, wanting to play.
Good luck to you...I hope you have a positive experience..Just keep telling yourself.."this isn't going to last forever" You'll be home and on the road to recovery before you know it!
T.

I'm glad you wrote this message. I just found it when I was getting ready to basically write the same letter. Our 5 year old Michaela is scheduled for the Mod Quad on Feb. 5th at TCH. You might want to talk to the child life specialist at TCH to make an appt. for a tour of the hospital and a chat with your child about what's going to be happening to them at an age appropriate level. They can do this the day before. Michaela was scared at first but I used a doll to "operate" on in the same place she'll be getting an incision. Now, she just keeps coming up with more questions, but she doesn't seem too afraid.
Also, check out the www,txchildrens.org website for all kinds of info for your visit.This has helped me feel more prepared for the trip to Houston from Florida.

I forgot to thank you for writing the letter. It helped reading the responses.

Leeann, are you Florida...were you connected with the Melbourne group? just curious- its me mary from Fort Pierce- east coast

Yes, We're with the Melbourne group. How are you doing?