United Brachial Plexus Network, Inc.

Hello all.
We came back yesterday with no surgery.
We went all the way down there got our Daughter ready for surgery .
than they tell us she has been put on a waitting list and sent us back home.
We spent alot of money to get down there now my Daughter is still awaiting for surgery.
She is almost 6 m and i feel like our time is running out.
I am so angry.
Well thanks everyone.
Salina

Where did you go? What was the reason you were put on a waiting list? Was this for nerve surgery? Was it because your daugther showed improvements and surgery was not needed at this time?
Sorry that you are angry. I hope you feel better quickly.

Your kidding, where were you supposed to have the surgery done? Why did they put you on a waiting list? I feel so bad for you and your family.

My thoughts are with you.

We were suppose to have the surgery done at Stanford/Lucil packard childrens hospital.
we had a set time for 6:30 Am Than when we were getting my Daughter ready they said delayed untill 12:30.
Than the next morning they told us we had got put on the waiting list,and to take it up with the Doctor.
So they told us to go back home and they would call us with another time.
Im just scared cause she is already 6m and ive heard now she is in the permanat injuery zone.
Salina

Thank you for yours and everyone elses thoughts.
Ive never thought we would haft to go through such a thing.
Salina

yes this was for primary surgery.
And no my Daughter has not got better.
He already told us he is going to haft to do the nerve graft.
And he said he would use both legs for the graft.
i think it has to do with c5 c6 & c7.
Also she has bad waiters tip.
Salina

Salina, if this is the type of treatment you get at a Children's Hospital, then maybe it's a sign that you should take your daughter's care somewhere else?!? "Take it up with the doctor" is no way to treat families. There are many wonderful BPI specialists in the USA that can help and do not treat families in this manner. Email me if you'd like. There are great doctors that can help your daughter along with programs to help with getting you to these appointments.

Tanya in NY

Salina, I am sorry you had such a bad experience going to surgery and then not getting it at the last minute when you know that your baby needs it. As I understand it, the "window of opportunity" for primary surgery is from 5 months to 11 months. Your daughter could still get that surgery, and I would recommend Texas Childrens Hospital in Houston. My granddaughter (lobpi) had primary and mod quad there, and we have been very pleased with how well she has done.

Call Lisa Davis at TCH and tell her your story. They will help you. They are really wonderful people. Get in touch with her ASAP. The number is 832-822-3290. Cal lfirst thing Monday morning, time is of the essence when you are dealing with nerves. You cannot afford to wait around.

Salina,

I'm so sorry to hear this news. I can't imagine anything more heartbreaking than getting your child (and yourself) ready for this painful experience, only to have it put off! I hope that you are successful contacting the doctor tomorrow (monday) to find out what the H$@! happened!

I agree with the others, perhaps an emergency call to another center is in order. Hopefully you can get this sorted out one way or another.

My thoughts are with you. Good luck, stay strong and take good care of yourself in all this.

Kate