United Brachial Plexus Network

My daughter (18 months) will be going through the ACR surgery with Dr. Kozin next month and I was wondering if any of you could tell me what to expect while in the hospital and afterwards, and if you have any tips for care afterwards, dressing, and anything else you can think of....The help is greatly appreciated! Also what's the weather like in Philadelphia in the begining of Dec?

And is anyone else going to be there around Dec 8th?

Thank you!
Diana

Just bumping this one up...

It's cold there in December. Bring a winter coat.
My son had that surgery with Dr. Kozin last year in October. The actualy surgery is pretty quick. My son was only 11 months when he had the surgery, he slept most of the day once he came out of surgery. I stayed there with him, he shared a room with 3 other kids that all had the same surgery that day. It was a nice support system. As far as dressing, we baught zip up sweatshirts 2 sizes to big. It was really easy to put the casted arm in first to get him dressed. If you want to see pics of the cast or brace, I can email them to you. I tried to attach, but they are to big.

That would be great. My e-mail is DianaLB1999@aol.com. How was your son at moving around after surgery? My daughter cannot walk yet and only crawls and I was not sure how that would affect her being able to move around and such

That is good to hear that you are paired up with other families going through the same thing...that makes me feel a lot better! I live in FL so Philly is very far away from home! Did you all stay at the Ronald McDonald House? Thank you for your help!

Diana

I stayed at the Ronald McDonald house the night before & the night after surgery. My mom came with me and stayed there the night of surgery, while I stayed at the hospital on a cot with my son. I think only 1 person is allowed to stay the night at the hospital.
He learned to get around very fast. He sat up on his bottom and scooted around. After a couple days, he was so fast. It's just amazing how adaptable they are.
I also live far, I'm in Michigan. Are you going by your self with your daughter? It was really helpful to have an extra person there so you can take a break. I think we held my son the whole day after his surgery. I also stayed at the Ronald McDonald house for the week when you go back for cast removal & therapy. That time I went by myself. It was hard being away from my other kids in a strange city. The people at the RM house are so nice. I got to know several families there. We stayed at the one in Camden, I've never been to the one in Pilly. I guess it's closer, and newer, but when we got there, they didn't have any rooms. We had made a reservation at both just incase one was full. Shriners arranged the stay when we were there for the week, that was really nice, no worrying about if you would have a room.

Diana -

First of all, I hope that all goes well with your daughter's surgery and recovery. You are in good hands with the team at Shriners.

Secondly, we will be there on the 9th for a checkup for little Ally. I believe our appointment is at 10:30 but we will most likely be hanging around there all day until our flight back to Chicago. We'd love to meet you! Ally had an ACR with Dr. Kozin in May of 2007...we'd be happy to talk about it with you.

And finally, check out www.twolittlemonkeys.org to find a bunch of stories and photos pre and post surgery (in the Monkey of the Month section). This may give you a better idea of what to expect.

Andrea

When Amber had her ACR in December 2004, we didn't stay the night. We stayed at a local hotel the night of surgery with Amber as it was an outpatient surgery recently at that time. Dr. Kozin provided his number to get in contact with him if we had a concern during the night, and we had an early AM appointment for follow-up in the AM at the clinic.

Pain medication prescription was given, but what a pain in the neck to get it filled at Temple where it was suggested to get it filled. Took forever and of course our BCBC insurance wasn't accepted there. Doesn't cost a lot of money, but just be prepared to have to possibly pay for it. We actually never even gave her any of it. We gave some over-the-counter medication (Tylenol and/or Motrin works well).

She came into the recovery room screaming and basically screamed the whole time. This is not unusual for children to have this reaction with anesthesia, along with it being a scary process and they wake up unable to move their arm. How do you explain to a little one they won't be able to move their arm? They don't understand and remember when they're that young so they're scared and upset at first. It will pass.

Bring a favorite cup or bottle with you with some clear liquid juice for the recover room. It's a comfort measure to have something familiar along with you will know what your child's favorite juice is. Make sure it's clear liquid though (no orange juice type of juice). Sips of that in recovery an be helpful to your child.

Carseat gets fitted before you leave. Some carseats don't fit your child the same with the cast on after surgery. Be prepared for this. You will have to eventually bring the carseat in to be fitted prior to leaving. They want to make sure your child is safe for travelling.

Amber figured out moving around so quickly. She was a little off-kilter for the first few hours in the hotel room, but that could also be from the anesthesia still, too. By the evening, she was moving around and running around (she was 2 at the time) like it didn't bother her. In fact, she tripped and fell in the hotel room and fell onto her front side. She jumped right back up and kept running around! Didn't faze her a bit. We put a pillow on the floor for her to put under her chest while laying down watching TV because the cast was bulky (she preferred lying on her tummy for TV). Next thing you knew...she was sound asleep on the hotel floor. We didn't have the heart to wake her as lifting her and moving her was harder with the cast, so we put some blankets on her and let her rest right there. She slept through the night as she was exhausted (as were we)!

Clothing: I just bought 2 sizes bigger for shirts that pulled over her head or buttoned up the front. Cotton so they're stretchy. Same with PJ's. The cast itself went down onto the hip area, as did the brace afterward, so stretchy waisted pants worked fine. Her coat was a bigger size as well, but she ended up using it for a few years as she grew into it the next season anyway, so not a problem.

Pre-op area was fine. Medicine by mouth to make her dreamy-eyed there. Lots of questions asked by the staff to you. Paperwork. They try to help you entertain your child (they have some toys, bubbles, TV, books). Amber got a toy given to her while there that was a bear you can draw on the shirt as a memory. She still has it 5 years later! Once they're ready for her in the operating room (OR), a staff member carried her to the OR and we went to the waiting room. Dr. Kozin came to the waiting room once she was settled to let us know that he was about to start surgery and her IV went in well while in the OR (hence the dreamy eyed medicine beforehand). Next thing you know, he was back in the waiting room telling us how things went and we waited a bit more for them to come get us to allow us to see her (they have to settle her and make sure she is physically doing well recovering from the anesthesia before you can come in, which is standard hospital procedure). A few hours in recovery room (at least for us), carseat fitting, paperwork, discharge teaching, you go get the pain medicine at Temple, then out the door to the hotel we went. Back early in the AM for a follow-up appointment then we drove 5 hours home.

We did a red cast because she was wearing it all of December and thought it would blend into the holiday spirit. I still clearly remember my two kids were getting pictures done with Santa and she was wearing a dress with a red shirt underneath it (red cast, too). The photographer kept saying to her "honey, can you put your right arm down please" not realizing it was even in a cast because the red cast matched the red shirt sleeve. I explained it to him and he was a little embarrased. Her arm stuck straight out to the side (modified position compared to most ACR post-op positioning of the arm). I chuckle when I think about it.

Good luck to you. We're going for a follow-up in the middle of December.