United Brachial Plexus Network, Inc.

First, let me say I hate writting. When I feel emotional it makes it even harder for me to express myself.
We just got back from TCH yesterday. Cathryn my 3 month old daughter had primary surgery on December the 11th. No one delt with her pain. The only medication the doctor would prescribe was plain tylenol. I'm a nurse and I couldn't believe it. My child moaned off and on for 6 hours. I was told that primary surgery patients do not get anything stronger than tylenol. Is this true? I would appreciate any input anyone has.
Cathryn has a incission on her leg. Does anyone have any recommendation on how to keep the dressing on. Do I need to keep using the ace wrap? The dressing to her chest is a solid piece of plastic. It is ripping the skin off her chest. The nurse who changed her dressing was a float nurse from the oncology unit. I'm not even sure if the correct dressing is being done to her chest.

Thanks
Sandy

Maia received Tylenol with codeine but it didn't agree with her so she took just plain tylenol.

I guess the stronger drugs are not good for tiny ones.

If she's having more pain issues, if I were you I would contact "Pain Service" at your local (children's) hospital and ask for their recommendations.

I hope it passes soon.

Maia had a lot of fear after primary. She was scared to go to sleep. Could some of this pain be anxiety?

We were told by a doctor after Maia's secondary that a small dose of valium - short term - might be an option to just calm her down.... calming meant less anxiety and less muscle tighteness therefore less pain. Just thought I'd pass that by you.

Please let us know how she is doing.

God Bless,
francine

we were at the hospital with you.... but I think that primary patients are on a different floor? we were on the 11th floor.

My son had a lot of pain after Primary, only Tylenol with codine helped him. I emailed you details. Keep in touch, Georgeann

Jade had alot of pain too. Mod quadf was worse. i Wrote TCH to have them talk to me about the pain issue and BPI surgery. i have had no reponse. Jade suffered for no reason. BUT anyway.... the leg stuff was hard to cover with bandages. we left it alone with no problem with outcome. SHe also had a terrible time with sleep.SHe would cry and cry. Jade was scared and i think thats commen in these little ones. SHe would do better with my husband we think becouse at that time he did not do ROM on her. she needed to feel safe and he happend to be it. ps. i hate writting too, it never comes out right.