United Brachial Plexus Network, Inc.

Sam had the mod quad done on Feb 18th and I swear that this has been the most difficult thing I have ever had to go through. EvER. To watch my child in such pain is beyond words. I cry myself to sleep almost every night. Therapy is like torture to both of us. I am only 2 weeks into this and I have yet to see results. He is supinating but he is so scared to use his arm at all when his splint is off that he doesn't do a whole lot yet. When does this get better? I am worried that we have made the wrong decision because I don't know when he "should" be able to use his arm again.
He did well in the surgery. Once he got out, he caught a virus somehow in the hospital so we were there for a few more days than the average mod quad due to his 104.3 temp. Horrible.
Can someone give me a boost? I am having a really hard time with all of this. It is just too much and I can't seem to stop crying.

Karen, I'm sorry that your son is having so much pain. Mod quad was painful for my child too. But we didn't take the splint off for eight weeks. What type of therapy are you doing? If it is all too painful, talk to your doctor and he'll modify. I'm sure they don't want your son to be in pain like this. We always did desplinting and moved my child into warm water, then put the splint on again to rest. We also always gave tylenol before and also later. I hope things get better soon. How traumatic for all of you. Sending you love and hugs.

I know the pain and agony that you are going through must be hard. To watch your child go through all of this. However, you need to keep in mind that you are doing it for his/her benefit. I do not think you have made the wrong decision. I am 32 and had the mod quad done. Yes, very painful even at my age where we are supposed to deal with pain better. Had I had the option to have it done when I was younger I would have done it too. Hang in there Karen. It'll all work out. Have faith and keep your chin up. *HUGS* Were pulling for you Sam!! Keep up the good work.
How old is Sam?

Karen:
My daughter Mariella had secondary surgery on Jan 22nd. She hated her cast for the first day and just that made me upset for her. That got better.

She had her cast removed on Feb 23rd. This coming Monday will be 2 weeks exactly. Let me just tell you how awful it was for us! The day she had the cast removed up until a whole week later my poor little girl was in SO MUCH PAIN. The second day was the worst and I kept asking myself if I should have done this surgery or not...that's how bad it was. She didn't even move her arm at first when the cast was off b/c she was so used to having it in something and not moving it. This was the fist time that certain muscle were trying to work on their own and in new/different positions. It killed me to see her scream when she was simply trying to pick up a toy. It killed me when I had to move her arm to dress her while she screamed. We had no splint by the way so our situation is different. When you have his splint off though I am sure they are going through the same thing where pain in concerned. This went on for a good week, like I said before. I think since she wasn't splinted she got used to having the arm free and the pain went away as she began to move it around more. I am sure that it will take some time. He is probably so much more comfortable in the splint and when it comes off he is in pain and afraid at the same time. It will get better! Don't question yourself about having the surgery though. You did what is best for him and what will help him in the long run. That's what I had to keep telling myself. If you want to talk or have any questions for me please feel free to email me. Ldybug4134@aol.com
Hope you both feel better soon! Keep your head up and dry those tears at night! =)
Krista

I forgot to say that I agree with "guest" and it did help us out so much by running a warm bath and putting Ella in there for a while. Motrin or tylenol won't hurt during this time. Use it as often as you need to so he isn't in so much pain. Good luck!
Krista

Hi Karen
it's so hard to watch our children suffer isn't it?
personally I'd much rather go through the surgery and aftermath myself for my child if I could.
My son Gavin (12 yrs robpi) has had 3 surgeries at 6 months 2yrs and 9 yrs - I have to say the older he was when he had the surgery, the more reluctant he was to use the arm after it - I think they realise that the arm is going to be very stiff and hurt when they move it, so they don't move it and it stiffens up and the cycle continues.
I would contact your childs surgeon to make sure every thing is as it should be and then go with the other posters suggestions of water- I always found Gavin had much more movement and was happier to move his arm in water, so we did LOTS of swimming and water therapy after all his surgeries.
About 6-8 weeks post op he was back to his normal self and playing on his playstation and Game boy as per normal.
keep your chin up - it will get easier
Karen

It is so relieving to hear that Sam is not "abnormal" with all of this pain.

As far as therapy, we are supposed to move his wrist back and forth, move his elbow (this one is the worst) and then we have to move his arm up and down (no higher than where it is splinted). We have been talking about doing the water therapy although we haven't found anyone in our area that does water therapy with BPI. No one knows about it thus far.

Thanks for the love and hugs. We TOTALLY need it.
Karen

Sam is a year and a half. I think that he is older than a lot of kids that have this done although I am not sure about that.

I know what you mean. Sam is definitely more comfortable with the splint on. He cries when he knows that we have to take it off. All of this is so hard. For him and for us. THanks for sharing what happened with your daughter.

Hi Karen, my daughter had mod quad Feb. 9th at TCH. I have found it is easiest for me to take a warm washcloth and put it on her arm in the mornings - the shoulder, elbow, wrist and hand when I take the splint off. Sometimes I give her a bath but the washcloth seems to work well. But if you think Sam is in a lot of pain, I would call TCH and ask them about it. Know that you made the right decision and that you are a very brave mom. Feel free to email me with any questions.