Back from TCH & NO SURGERY

[Jallie]

Well Emily escaped surgery this time around. We were moments away from Emily going through the surgery doors and we are only waiting for Dr. Shenaq to come out and talk to us. We did not see Dr. Shenaq in evaluation in January and he has been her surgeon the last two surgeries. We (my husband & I) had previously decided to back off on the Infraspinatus Release and only do the bicep lengthening and wrist tightning procedures now. We explained to Dr. Shenaq our concerns with the Infraspinatus Release and he thouroughly evaluated Emily in pre-op. He feels her shoulder is the most important area to work on, but that the Infraspinatus muscle could be stretched, instead of surgically released. And that the bicep is only a 15 deg. contracture and should be dealt with after the shoulder. He spent about an hour with us in pre-op, giving us his recommendations. The stretching of this muscle requires a Dynamic Splint for 3 months 24/7, keeping her arm out 90 deg. and then forward. The splint is adjusted downward and inward 5 - 10 deg. every two weeks, hopefully bringing her into internal rotation at the shoulder. I had a ton of reservations putting a 4 year old in a slpint like this for 3 months, then if it doesn't work a surgery and more splinting after. Dr. Shenaq and my husband pretty much convenced me it's the way to go. The splint is large and cumbersome, but Emily has not complained one time. She is handling it 300% better than I had expected. Barry the Orthopedist who built the splint was awesome and the nicest guy you could meet. We spent the entire week between Barry's office and at TIRR getting instruction from Nancy on therapy. We also back to Dr. Shenaq's office for a check over before we flew home. I really appreciate the attention and times he gives his patients and their parents. If anyone else is using or has used this type of splinting I would really love some feedback. Also I wasn't able to hook up with Donna or the other family. I didn't see any BP kids Monday morning, but we did meet a brave little boy Zack who just had the QM at TIRR.

[Donna (Colleen's Mom)]

Hi Julie!
Welcome back! I'm glad to hear that Emily did not need surgery. The splint doesn't seem like much fun but she'd probably have some sort of splint even with the surgery, although perhaps not for three months.

I must have asked at least five people what room you were in. They could not tell me because of patient confidentiality issues. Patient services was willing to tell me you were in PACU, then when I called later they said there was no one with Emily's name admitted. Now it all makes sense, since she was never admitted as an inpatient!

Glad to hear you are home safely. Take care!

[francine]

Wow Julie. That's so interesting. Can you get me a picture of the splint? Am so curious. What a week you guys must have had. I did try and reach you, too, but they told me you guys weren't there! LOL

-francine

[Jallie]

That's funny Francine. Seriously thought about skipping town and taking a vaction instead. lol. I took quite a few photos of the splint off (different angles) and on. I was going to email you and see if you wanted some for your site. I hope to get them on my computer today and if I do, I will shoot them over. We have now decorated it with stickers and I fabric glued on some patches, now Emily thinks it's really COOL.

Julie Wolfgram