United Brachial Plexus Network, Inc.

Hi bpi family! My four year old, Kaylin, just had the capsulodesis done with Dr. Nath at TIRR. All went well, but it has been a whole different experience with the splint this time around. She had the mod quad Nov. 2000 and the recovery was a breeze. I suppose the one year in age makes a lot of difference in- well everything!

I thank God everyday for Dr. Nath and his program for the help that he has given to my daughter.

I also read a post on vision loss in the affected side. Kaylin has this problem too. I am taking her to an opthamologist next month- I'll keep you posted.

Thanks for everybody's input on the board!
Sandy

I have a question. What is the capsulodesis done for? What part of the arm or shoulder does it correct?

HI Sandy - Maia just had her capsulodesis, too and she is 3 1/2 and you got it right about the splint experience. Are you exhausted or what?

Good luck and we'll be counting down the days together...

-francine

would your daughter like to see pictures of Maia in her splint? Sometimes seeing someone else with the same thing might help??

http://www.injurednewborn.com/maia/capsurgerypics.html

Exhausting...yes. I haven't been on in a while with all that has been going on. katie has 9 more days in the 24/7 splint for the caps. My gut hurts thinking about taking it off. It wasn't like that with mod, there is just something about this one that has unnerved me to no end. Maybe it is the age thing. I keep having a bad feeling about the results of this one, I don't know why, but perhaps it is because we don't have that "anticipation" of seeing what movement will come from this surgery as it is not about that at all.

Miss everyone, Francine I am sorry that I haven't responded to your emails. I feel as though I have been lost for a few weeks now...the time has just slipped away from me. Did we change the boards or am I just in a funk and don't realize it was always this way? (I mean "extra" boards or different names?)

Christy - I hope you guys are planning to do it in warm water somewhere... quite frankly I'm worried about the elbow coming down. So there are two joints getting pressure of coming down not just one like the MQ - maybe that's the difference? I'd love to hear from others who have had this splint (and survived it to the end - lol) and how it went afterwards..... Mary - (if you are reading this) I know you said that Sarah was ok - but what happened when she brought her forearm down? or is this just my 'own' fear running away?

I just got Maia some nice smelling bath gel tonight - hopefully it will help with the 'smell' ??? ugh -
we are changing her undershirt daily because she had some major skin breakdown that needed to be addressed- it was actually bleeding and all... we wash her chest and back, dry it, apply a THICK layer of cream then put the undershirt on.... if it's really bad then I wrap gauze around it too... somehow she can get her little hands under that splint to scratch!! I also file her nails every other day to keep them from getting sharp. The daily clothes changing / washing / new undershirting takes without a doubt - over an hour. But we're getting better at it and Maia is trusting more...and I can actually do it alone at this point (if Maia is being helpful... if she's acting out then we don't do it)... I guess I just had to vent a bit... Feb 4th please come soon! that will be our New Year's celebration for sure!

Francine

This one is hard stuff, huh? I too am worried about her arm when it comes down. It is so different than the mod, I don't know maybe it is just exhaustion speaking.

If I could get a certain person at TCH to foward the orders as I was instructed to ask for then I may be able to get her therapist to meet us in the warm water pool. If not then I guess we will do it in a bath or come up with some other plan. I may keep it on a few days longer to accomodate having some time off for her so that I can be aware of any pain issues and address them if they arise. That would not be taken care of at daycare...

She has been telling us it is itchy, it hurts. She never used the word hurt in itself before. She used to show us it hurt by slamming it into the crib or wall while screaming but now it is just a sad little look while she tries to reach and rub her arm and verbalizes "hurts mamaw, armie hurts". I don't know which is worse,I still can't help her and take it away. I guess when they can't use the words we can appease ourselves that perhaps it was a bad dream or a temper tantrum, frustration, whatever. But when they use that word HURT it is like ripping your heart out of your chest.


Boy that splint sure does stink I agree. Katie is fairly cooperative but we still stick to two because we never know when she is going to throw a big one, so to speak. Thank goodness she doesn't have big skin issues! She is asking us point blank now, "not put on, pease" and then of course there is the "OK OK, I sorry" with a single tear drop when we remind her of how many more days there is. I wish rot on the OB everytime I have to hear her apologise because she thinks she is being punished. I know you guys don't think that is healthy or some of you think the OB may not even deserve it but cut me some slack today OK? This is hard stuff and when you listen to a baby going through this then you have to direct your emotions elsewhere or you'll just be one huge crying jag. And then where would she be--watching her family go nutso! Sorry, just a little tempered this morning, I need to go pray a little extra this morning.


I will keep you updated on the splint removal. If we survive it...

christy - are you taking the splint off to check for skin breakdown? Something might be going on underneath that splint.... we take Maia's off every day 2X a day now to check because she had severe skin breakdown....

We put Maia on the dining room table on a sheepskin and a blankie so it's a high loft kind of softness. We take off her splint and her undershirt and while we hold her arm in position, we also bring her down so she is laying down. We wash her while I hold on to her little hand so it won't move. But so far she's been really good - she knows it, because if she tries to move it, it hurts...

Today I am going to remove all the foam and replace it with the second set, so I can wash the first set. Have you tried this? I got some nice smelling bath gel last night so I'm going to put some in the water to make it smell nicer. I sure hope they gave me enough foam to do the whole thing.

About getting that prescription - email or call LisaT (over and over if you have to) to get what you need, call the doctor's secretary... they may be out of town with holidays? How about her pediatrician - would he/she write that scrip to be in the water? I wouldn't do it quite frankly without being in warm water - I think it would be barbaric because they've been tied up for so long. (I don't have opinions now do I?)

Good luck and have a Happy New Year - I hope..

When is splint removal day??? I'll be praying for her and you!

-francine

Yes we are definitely checking the skin. She has one area beside the incision that looks perhaps like a stitch trying to work it's way out. I am concerned she is getting a pilanodial (SP?) cyst, that area looks kinda weird and really sore right now.

I have been shaking the bush so to speak and if necesery her ped will write it but my concern is what is allowed? I have emailed Dr. Nath, will share his response as soon as it comes back.

We still use the small blow up tub for katie's on top of a vanity in the bath. We are short and this is just the right height for us so she actually gets to sit in the tub and we try to do it every other day or so. We didn't get quite enough to redo the whole splint but our OT came through (for once) with some and we have changed it out.

has Maia been pulling at her arm any or indicating to you it hurts? How about Nicole (if you are on here Tina, I know that you are as swamped as we are)? She keeps indicating various areas that it hurts, mostly "itchy" for the back of the shoulder (incision site) but her bicep and fingers are where she says it hurts and she tries to reach and pull or hit that area. Not severely so , just complaining, you know? It could be new sensations, she was still getting results from the primary and mod. And her pec area is getting huge compared to the non bpi side--what is up with that? I thought for sure it would be smaller and lower...

January the 8th. Many prayers are needed and if we can't do it in the pool then I will wait and take it off for a few hours each day until the weekend so I can monitor the pain. But I think we can get the pool thing covered if Dr. Nath says it is ok.

Here's the protocol sheet I just received in the mail... is this the informational sheet you are looking for?

Since you are already past the first 6 (8) weeks - here are instructions for everything after that...

==================================================


SECOND 6(8) WEEKS

Splint will be worn at nighttime only.

Patient will resume therapy but is limited to active and passive range of motion only. No resistive exercise or strengtheningf is permitted at this time.

Perform exercises at home as instructed by therapist.

AFTER 12 (16) WEEKS:

Splint wear will be discontinued.

Continue therapy with no restrictions. Resistive exercises are not included to begin muscle strengthening. Perform range of motion and resistive exercises at home as instructed by patient's therapist.

For questiong regarding therapy, please contact the Physical Medicine & Rehabilitation Department at TCH
Phone (832) 826-2102 or 1-800-364-5437 ext 62102



Christy - hope this helps...
-francine



about the pain, itching and all that - maia's doing it too....but about the scar - in Maia's MQ surgery every place a suture came up it got infected so keep on eye on those reddened areas...actually you should get her to a pediatrician to check them out...she may need to get on some antibiotics. On Maia, each spot that got infected ended up keloided! Her scars are a mess... (but Dr. Nath did a revision on the worst one and so far it looks great!)

The capsulodesis is done to put the "ball" back where the "socket" is supposed to have formed in the shoulder. Nylon stitching holds it in place and the goal is to have the socket fully form in time. My daughter's socket didn't form because she had no movement in that arm or shoulder due to the injury.