United Brachial Plexus Network, Inc.

My son Brayden had his BP surgery last Thursday. He is 3 months old. We went to St. Louis where Dr. Parks did his surgery. He had 4 nerves that were severely injured. nerves were pulled completely from the spine and he could not fix, the other 2 nerves he used some kind of synthetic material. He did not use the nerves in his legs because they would not me big enough. Dr. Parks said this is one of the worst cases he has seen. We were able to go home the next day. I wish we would had stayed at least another day. He is doing ok he is really cranky, but I can't really blame him. They are saying hopefully he will get movement in his hands and elbow and some in his shoulder. By listening to Dr. Parks he did sounded not very optimistic.

I myself have gone thourgh every emotion in the past several days. It really bothers me knowing my son was fine until he was born and this could have been prevented.

I was wondering has anyone else had to have the synthetic material used, and if so how are the results?

Bridget Brayden's mom (LBPI)
Kentucky

Dear Bridget,
I just want to give you hope for your son's future. Our daughter had her primary surgery at 4 month of age at the mayo clinic. All five nerves were affected and C8 and T1 were avulsed. She had no movement at all in her arm when she went into surgery. She will be 3 in a few weeks and is learning to use her arm more and more everyday. She has some use of her index and thumb and can grasp things that are light weight (we were told that she would probably never use her fingers at all). She is learning to hold things with it and even though we have to remind her everyday to use that arm and make it stronger, it's worth it because she is using it more. We have been in therapy with her since she was 1 week old and continue to this day.

Our kids respond differently to the surgeries but they find a way to do things. They find "there way", it may not be our way, but they figure it out. Brayden will surprise you. We all know the pain your family is going through, but you will be amazed at how things are going in a year and then two. As far as I know we never had any synthetic material used but they are finding new things and ways to help with this injury.

Good luck to you all.
Michele Kyley's mom (RBPI)

I wanted to comment b/c I am actually surprised that nobody responded to dunloe's comment. I disagree with her statement:
"Merely in the fact that you describe your child as "cranky" indicates that you do not fully understand your responsibilities. You have a feather in your hands, treat it accordingly."
To suggest that someone does not fully understand their responsibilities b/c they use the word "cranky" is completely ridiculous. I know how hard it is to care for a post operative child after having a BPI surgery and I will also say, for several days after that surgery, my daughter was also cranky. This does not mean that I did not fully understand my responsibilities. My responsibilities were 100% in place and taken care of. The initial poster here was simply stating a fact. I am sure we can all say that our children get cranky. If you can't use those terms then you are very uptight with life. Also, it is different to use these words with our own children. I wouldn't call someone else;s child cranky, but with my own, why not. If it's true, it's true. I would be cranky after surgery too. Even if I had the best care in the world and the best support system. I am sure I would be cranky. Our children have every right to be cranky after a surgery and us, as their parents, have every right to call it whatever we want. It does not mean we love them any less. It doesn't mean that we aren't doing the correct things for them. It is a simple statement and shouldn't be taken otherwise. How can someone tell a person whose child just had a surgery to treat their child accordingly? Give me a break. Every mother that I know here is a great parent and we do just what everyone else would in the same situation. Those things are:
give love, accept our children when they are sad, happy, upset, CRANKY, do what is best for their particular needs, help them achieve their goals, support them unconditionally. This lise goes on. It honestly makes me feel ill that someone has the nerve to post here that a mother is not taking responsibility for their child's needs and thinks they need to tell them to treat their child accordingly. Let's learn to treat eachother here with respect and accordingly. IF you don't have something good to say when someone needs support then keep it to yourself.

I want to thank those who have offered their support and prayers for me and my son Brayden. I also want to thank Krista for her response to Dunloe's comment.I was offended by Dunloe's comment.
I know what my responsibility is as Brayden's mother. That is love him unconditionally. I have been doing this since before he was born. My son is a very good baby and for me to say he is "cranky" after surgery is my way of saying he has been miserable. If I was to go through the same thing my son has I would mostly likely be more than just "cranky". I feel sorry for what my son has gone through at such a young age. He is only 3 months old and has had a major, major surgery, but If I had to do it all over again I would still make sure he had the surgery, and the best care I can possibly give him. I know that I have done everything in my power to give him the chance to be as normal as possible. Being from a small town that does not know much about this condition. I had to take charge of getting my son the care he needs. I setup his PT and OT and even his appointment for St. Louis. As his mother I took on all that responsibility instead of waiting around for someone else to handle it, because my son is very special to me or shall I say a "feather".

I am praying for your little one. I now for us the primary was the start of a hard time. I did all the therapy everytime i changed Jade's diaper just like i was suppose to. SHe ended up being scared of me becouse the therapy hurt. SHe got very close to her daddy. Jade was cranky for awile. THe good thing though is that it was 7 years ago and she got so much from the surgery I would do it again.

Joshua was cranky for the first three months after birth; he didn't have nerve surgery but I think the nerves recovering feel very awful and he was so sensitive and in a lot of pain. We DID treat him as if he was a precious feather. He was carried everywhere on his own memory-foam pillow, in and out of his cradle, to be breast-fed and everything. He just did not want to be touched or held for the first month at least. And after that we had to "stretch" him for his torticollis which he obviously thought was torture and we were trying to kill him... yeah, he was "cranky" alright.

And if some self-rightous mother had tried to suggest that my observing that my child was not happy meant I didn't "understand" my "responsibilities" to him, that I didn't get to the BOTTOM OF MY SOUL how fragile and precious he was and I needed HER to tell me to "treat him accordingly" ... I think I might have jumped through the computer screen and wrung her neck!

Kate


Message was edited by: katep

Hi Bridget

I know I am a little late responding to this but I just wanted to let you know that just because one person here is negative not to get discouraged!
Cassidy was cranky for the entire four day hospital stay and now six months later is cranky at least once a day!
Cassidy's surgery is very fresh in my mind and I remember the wide range of emotions I experienced and how much love and support I needed...the last thing You need right now is negative, hurtful comments.
I pray for a quick recovery for your little boy and I'll also be praying that he would gain good use of his little arm....
love Dawn
mommy to Cassidy 16 months ROBPI

Bridget,
Cranky that is the word for a child that is miserable My son who is now 8 was very cranky, I don't know what I woud have done if I didn't have older children that could help me with him. They were 11, 8 and 4 !! They were my life saving device at the time, my husband was military and always gone. Don't let one bad apple spoil the bunch, what was said was not appropriate, if it was, it would not have been removed.(THANK TOU TO OUR VOLUNTEER MODERATORS, you do an awesome job!!!) You have every right to have one of those moment or one of those days, I know that I did and still do, it is hard. Just yesterday Brandon was complaining that his arm hurt, the first time in ages and I just wanted to cry, but couldn't cause he was there. Good luck to you and Brayden !!! He will do just fine !!
GAYLE mom to Brandon ROBPI 9 years old

Bridget

I am an adult obpi and according to my older brother no one slept in the house until after I was a year old.

I did not have surgery but wore a brace for 11 months and they had to do ROM and all sorts of massages to help me.

It's funny because I am not a cranky person by nature just must have had a lot of pain as some of the nerves began to regenerate.

I really feel for all the parents on this board because I know how devoted my Mother was to me.
My Dad died when I was ten so she worked very hard with the help of some of my older siblings.
I wish she would have had someone to talk about my injury with.

I hope things go well and we will soon hear of some new movement for your sweet baby.

Prayers for your family
Kath robpi/adult