United Brachial Plexus Network, Inc.

Let me first start by letting you all know that Amaya is home and fine. She is taking Tylenol with codene as needed for pain/discomfort and taking recovery one day at a time. Dr. Kozin with Shriners Childrens Hospital in Philladelphia performed her surgery on Tuesday, 8/31. Dr. Kozin was very warm, friendly and professional. He answered any and every question that I had before, during and after surgery (and believe me, I had a ton). I emailed him so much before the surgery that I was beginning to feel like the biggest pest ever but he never minded, in fact encouraged it.

Excuse me if this gets lengthy but I want to give you as much info as possible in hopes to be as helpful as possible. Amaya will be 10yrs old in October. She is 55" tall, weighs 97 lbs, and has a ROBPI. She also has asthma, allergies and excema. Her surgery involved making two incisions on the upper right side of her back and streching her lower trapezius over. This procedure was to give her better external rotation. I was warned that she made need an Allograph ((hope I spelt that right) before the surgery and I signed all the paper work. I was told that she would then be put in cast with her arm down at about 90 degrees, palm up and externally rotated. After surgery Dr. Kozin explained to me that she did need the Allograph because her Trap couldn't stretch all the way but this was no cause for concern and that she was fine and that I could see her very soon. Here is were it got scary for me - When I finally saw my daughter her cast position was not as discussed and was having a full blown panic attack. She was yelling and crying and begging for me to help her. She wanted the cast off. The nurses told me they had already given her Fentanyl and Toradol for pain and Zofran for Nausea. Nothing I could say or do would calm her down, I was heartbroken and felt very helpless... I spoke with Dr. Kozin who explained to me that because of the allograph he changed the cast position to keep tension on the tendon and he prescribed valium to calm her down. After the valium she was much better. Everyone tried to explain to me that what I was experiencing with Amaya was quite normal because she was just coming out of Anesthia and feeling very restricted in the cast. They assured me that she was not feeling pain. However, as a mom, I just wanted to comfort my child and I couldn't and that was the worst feeling in the world. Once she was calm (which really was immediately after given the valium), she was taken up to her room. She shared a room with a 12yr old girl who had surgery on her spine. She and her family were very lovely and kind people who showed me the ropes while I was there. Amaya did have pain but nothing that wasn't manageable and by the evening she was up and walking around (taking it easy). I did ask Dr. Kozin the next day after the surger (more because I was still a little nervous) if he considered Amaya's surgery to be a success and if everything went as he had hoped. He felt that it was a success and he was pleased with the way things went. We stayed the one night and was released the next day after having her cast trimmed and recieving care instructions. She is due to go back October 11th for cast removal at which time we will be staying for 5 days of physical therapy. I will update you again then. I truly believe that God has allowed the surgery to give Amaya new movement and that we will see it when the cast is removed. Please continue to pray for my baby and I will also for yours.

I hope I didn't ramble on too much and will answer any questions that any one has. The only dumb question is the one left unasked! I thank you all for your support. Now, back to my patient...

Tiffany (Amaya's mom)

Thank you for the update on Amaya. I prayed for you both. Please tell Amaya that I think she is a very brave girl and so are you, Tiffany. I bet every mother at Shriner's felt the same way as you have...helpless and so fearful. The more parents lean on each other you and Amaya both will feel better each time you go there....and we all are here when you get to a computer.

HUGS to you both,
"Gramma" Carolyn J
LOBPI/72

I am glad you are home and she is doing well!

Thank you both Carolyn and Marieke and everyone! I really do feel an overwhelming amount of support during this time and I am so incredibly grateful.

I was able to put Amaya in a very shallow tub today. I wrapped her cast up in plastic so no water would touch it and I didn't fill the tub up high enough anyhow. It worked... I was so happy and so was she. I just can't imagine six weeks of only sponge baths...

School starts Tuesday, September 7th. I actually have five children. The fourth one is starting Kindegarten and Amaya doesn't want to go (I also have twins in high school and a 21 month old hom). This should be interesting...

what position did they cast her arm in? when i had surgery, i was never told what position my arm would be casted in, and it was straight out at my side. i wish her luck in her recovery

Thanks Mel, her cast position is what I consider to be "statue of liberty" style. The cast wraps around her trunk and her right arm is up like she is going to give a high five (we've been keeping it light over here with a few jokes here and there). As long as she is laughing and smiling, I am okay. She selected purple for her cast color...

i wanted mine to be pink but they didnt have enough of that color so i just had white... it was boring, but i got everyone to sign it!! if youre wondering about shirts to wear over it at all, i wore like XL shirts and it fit fine, there was a lot of room for the cast to go through.

Thank you for sharing so much in detail. I am sure this will help someone else that will have to have this procedure done.

I pray for a speedy recovery and for comfort! I can't wait to hear the great outcome of this procedure with your daughter!

Ok, I am still in Philladelphia staying at the wonderful Roald McDonald house on Erie but I just had to let you all know that Amaya's cast came of on Monday and she has 85 to 90 degrees external rotation (she had 20 degrees before surgery). This is a first and hopefully last surgery and I couldn't be more happy with how well she is doing. I cried when I saw my daughter reach back with out arching her back... This is so incredible!!!! I would be more then happy to speak in more detail to anyone. I just love what Dr. Kozin and Shriners has been able to do for our daughter and I couldn't be prouder of my tough 10 year old princess!!!!!!!

I'm so happy to hear that Amaya is doing so well. Today they call it the Statue of Liberty cast, I was so surprised when I saw it for the first time. I'm 70 and wore a similar but removable cast for 11 months as a child. I had that brace in an old chest until about 12 years ago. It laced up around my body and had was expandable as I grew...LOL... My arm was strapped up in what they called Traffic Cop position. My arm strapped into it... I promised my Mom I'd never throw it out but had a flood in the basement and just threw it away. I thought I was the only one in the world with this injury at the time. Little did I know that in 1999 I'd find a whole bpi world and the newly formed UBPN Network.

It's amazing how far they have come with treatments but still know that PT is a forever part of our life. So glad that the kids don't have to wear braces/casts as long as I did. Mine was removed for therapy baths etc....

Please keep use posted on her progress.

Kath robpi