United Brachial Plexus Network, Inc.

Kyle just recently had the mod quad with the capsulodesis surgery. So he is in the splint with his arm straight out to the side at 90 degrees. Well last night I was changing the dressings and giving him a sponge bath, washing his hair in the kitchen sink because today was going to be his first day back at school. Well half way into getting him dressed he started crying. Not crying from pain, I think just out of frustration. Well he really got himself worked up and it was breaking my heart to see him so upset. But the real heart break was when he said to me in his very grown up voice "I wish God made me with three arms so I could still do everything". I just sat there and hugged him trying to console him. I did not want to show him how upset I was for him. We went and curled up in his bed to read a story and he finally calmed down enough to go to bed. I was so upset, sad for him, angry at myself (wondering if I made the right decision to put him through surgery) and angry at the delivering doctor for hurting him in the first place. It was just a very hard night. So on to today.....it was a much better day. Kyle went back to school (I stayed with him the whole day). His friends and teacher were so glad to see him. He was so happy to be back. He had such a good day, going right back into the normal routine. There wasn't really anything he had trouble with, (of course he will need help going potty). Anything he couldn't handle on his own the other kids were eager to help him. His class is small (only 10 kids) and they are all so close to each other...it was great to see them all do so well with Kyle. I am sure there will be other bad days of frustration, but I think we will be OK. I am just so thankful that there isn't any pain issues to deal with along with the splint. I pray that these next few months go by smoothly and quickly. Sorry this is so long....but I knew you all would understand the emotions we go through. Thanks for reading. Bless all our little angels. Take care.
Karrie & Kyle

My daughter just went through her third surgery on 11/26. We have went through quite a few of these meltdowns. Hang in there. It is a very bumpy road but when the brace comes off and he can do new things that he couldn't do before, it will feel like it was worth it. Kyle will feel it too. My daughter is three and has been out of the capsulodesis splint (straight out to the side 90 degrees) for 4 weeks. Her favorite thing to do lately is stand in front of the mirror and look at what her arm can do. Yesterday she showed me how she could clap her hands above her head. Before this surgery I would have never thought she would be able to do this. This reassures me that we did make the right decision and Bailey is glad we did too.
Hope this helps
Jodi

Hi, Karrie. I'm sorry for your heartbreaking situation. I can relate as I'm sure many here can with various experiences. It sounds like you handled it just fine. Our experience was kinda the reverse. Nicole adjusted very well to having the splint on. I think that's b/c although she'd gotten some increased movement with her prior surgeries, she really didn't functionally use her L arm very much at all prior to the Caps surgery. So, it wasn't too much of an adjustment to be splinted. Well, I don't really know what happened when she got her splint off. I don't know if she forgot how limited her function was or what, but I've seen her get very frustrated and have some major meltdowns b/c her arm won't do what she wants it to do. It's not like she's trying to do things that she used to be able to, but she's just trying to make it move "normally" at times. I even saw her hit her L (BP) hand with the R b/c it wouldn't stay on her knee when she placed it there. I've just been acknowledging her challenges and have been teaching her about the word "frustration." I'd say that was our word for the week last week. I'm also working on trying to re-channel her frustrations as well as encouraging her to ask for help when she's having difficulty and needs assistance. I also suggested to Nicole that when she says her prayers that she ask Jehovah for patience. I told her that I pray for patience all the time and that I think it will help her if she prays for it too b/c she's going to need it to deal with her frustrations. I too am praying for God to give Nicole the extra patience that she needs. It sounds like you have a good handle on it all though and you are right -- there will be good days / moments and bad days / moments. Maybe you can tell Kyle that God made him with 4 arms b/c he has a very loving and supportive Mommy that will help Kyle when he needs it. Everyone needs help sometimes and I believe it's okay to ask for it when you need it. I just try to encourage Nicole to try something herself first before asking for help. Oh well, I hope this helps and I'm glad to hear that Kyle is not in physical pain. Please tell Kyle that I'll include him (and you too, Mom!) in our prayers for patience. Take care. -Tina )

Jodi, thanks for posting your words of encouragement. I know that it helped me!! -Tina )

Karrie - oh this is so hard isn't it? Just want to wrap my arms around you and Kyle and hug you both.

As hard as the experience can be and might be for some- I do believe that this is where we will gain most of our learning.

I know that doesn't help while you are going through it though. Just know that there are many of us here that know EXACTLY what you are feeling at any given moment in time!

God Bless,
francine