United Brachial Plexus Network, Inc.

Hello Everyone,

I am new to the website and am so thankful I've found you all! My daughter Claire (7 months robpi) is scheduled for Primary Surgery at next week. I would appreciate any tips and/or words of advice regarding the Primary Surgery experience.

Thanks,
Marcy

She will have the surgery at TCH. Thanks!

Marcy:
Just wanted to wish you luck.
I hope everything goes well and that Claire recovers very quickly.
My thought are with you during this time.
~Krista~

Hi Marcy,
Good luck with primary. Our son had primary surgery at TCH last week. Everyone is so nice,wonderful,and helpful. Going to clinic is so comfortable everyone is so friendly. Walk around and talk to other families. I met a few other families while there, talking with all them during surgery made things much easier. After surgery when we got our room my baby cried everytime I laid him down in the crib. The nurse brought us a regular size bed so I could hold my baby and sleep with him next to me. This was wonderful. ASK for a regular bed immediately if your baby is fussy at all. There is not enough room for mom,dad and baby on the couch. If you're going on your own without a spouse this won't be necessary. The next good thing was just getting out of the hospital. Go for a walk outside with your baby as soon as she can be unhooked from everything. Walk around the hospital just get some fresh air. Don't feel like you need to stay put in the hospital room. Talk to other people around you. It feels good to relate with others. Plan on not getting a lot of sleep and dedicating your time to your baby. Try to be happy and upbeat because your little one can sense how you're feeling. What a blessing it is to have these surgeons, who are angels sent to bring healing to the damage that has been done to our children. I'm so grateful for the gifts that have been given to them and that they acted upon and learned the skills necessary to help my baby and so many others. These doctors are truely a gift in our lives.

I second all of the above! We were really adament about a regular size bed from the minute we went to recovery. As soon as we went up to our room we just transferred our baby from the crib to the regular bed. It was very nice (especially for nursing). We were really fortunate to have met some wonderful people at clinic (Samsmom and Sali to name a few). Our daughter was really tired of being in the room so long walks and staring at the fish really helped. Good luck!
Shannon

Thanks so much for all of your support. I'll let you know how everything goes next week.

Marcy

Marcy,

How did the surgery go? We are scheduled for surgery in January. Now that you've been through it, do you have any tips? Thanks so much.

Hello,
My Daughter is 6 m robpi and is suppose to have primary soon also.
We have not got it done yet.
Who are you going to for your daughter?
we were suppose to go to Stanford.
Well good luck and keep us posted.
Salina

Hi Salina,

My post is actually from this past May. Claire had primary surgery in May at Texas Children's Hospital with Drs. Shenaq and Laurent. She was 8 months old at the time--she is now 15 1/2 months old. We are pleased with her results thus far. Good luck with your daughter's surgery, and keep us posted.

Marcy