United Brachial Plexus Network, Inc.

Hi, all:

Well, we're back from TCH after Danny's caps/acromio. It went great, and he's adjusting well to the splint. I had a few (hopefully helpful) thoughts to share for any families who are facing this surgery:

1. The surgery lasted about 2 hours.
2. Danny's pain seemed to be less than he had after the mod quad, which was a nice surprise!
3. I know some mom shared about problems with the splint piece that came off between the arm and torso parts of the splint. Well, TCH has upgraded its materials for the splint, and it's much stronger now - so there should be no separation anymore.
4. Before the surgery, I took apart the left side of a bunch of big shirts and velcroed the whole seam. Turns out that wasn't necessary. The best thing we've found is simply get button-down shirts in a bigger size and cut a hole from the bottom of the sleeve down the seam, but not quite to the bottom of the shirt (just create a big opening on the injured-side seam).
5. We received a very detailed therapy protocol to take home, showing what to do in detail for all the weeks ahead - one copy for us and one for our OT. That was great.
6. Splinting is 6 weeks/3 months - at least for Danny.

If anyone wants to talk about the surgery in more detail, please feel free to e-mail me! (And to Dani and Rachel ... it was so great to meet you guys and your sweet little angels!)

Janet
jmefferd@msn.com

Hi Janet.

So glad you're home and doing well. I've been thinking a lot about you, Charley, and Danny this week.

Keep us updated on his progress!

Cherie

Do you have pictures of what you did with the clothing? I'd love to see it to prepare for my son's surgery. Francine's site can post pictures there. Maybe you can put a picture up there so we can all see what you did?

I'll take some pictures and see if I can get them onto Francine's site. Great idea!

HI Janet!!! It was so nice meeting you. I hope Danny is continuing to do as well as he was at the hospital. He is such a little trooper!

Amanda (4 years old) also had the caps/acromio surgery this past Monday. She is doing pretty good but having a terrible time sleeping. I think this splint is so much harder because the arm is positioned in front of the body making it impossible for her to sleep on her tummy(the only way she has ever been able to fall asleep). On a more positive note, she has already returned to school! She stayed the entire day on Friday! Can you believe it? I thought she'd want to at least stay home until Monday but she really wanted to get back to her friends. I came to pick her up early and she looked at me like "what are YOU doing here?" So I went back home and picked her up at her regular time. UNBELIEVABLE!
I will also send Fran some pics of her in the splint with the clothes I altered. Oh, and a poncho is just a perfect alternative to a jacket. Luckily, they are pretty popular right now and I was able to find one at BabyGap.

Janet & Rachel, I'm glad that Danny's and Amanda's surgeries went well. I hope the recovery goes well and you get some great results. -Tina

Janet,
Just curious, how old is Danny? Did you have a CT scan done before the surgery to know that he needed the surgery done? Glad to hear that he is dealing well with the pain.

Cherie ... Thanks. You're the best. Hope you, Jason and Sarah are doing well.

Rachel ... It was great meeting you, too! Amanda is a little doll. I am so sorry she's having difficulty sleeping. But I can see how the splint isn't really designed for stomach sleeping! It's good to know she's feeling well enough to go to school. Please keep in touch so we can compare notes on recovery!

Jules ... Danny is 2-1/2 years old. Yes, he did have the 3D CT scan beforehand. Is your child facing this same surgery?
Janet

Janet,

Yes we are contemplating this surgery for my daughter. How did Danny's CT scan look? Was he posterialy dislocated? Was there a space between the humeral head and the joint? Was the clavicle and acromion overgrown? Just curious what other people are finding out.

Julie

Does anyone know if other doctors are finding the acromion/clavicle overgrowth?