Discussions that mention valium

Cerebral Palsy board

Hi Tara, my 4 year old daughter Brooke had this surgery with Dr. Park in July, so everything is still very fresh in our minds! We stayed at the parkway hotel, which I would recommend. I think you can take the train from the airport, but we rented a car as we had my daughter's twin and grandmother with us. I would recommend leaving your 10 month old at home. It would have been nice to just focus on our daughter who was having the surgery. The surgery took about 3 hours. Despite the heavy medication the first day, Brooke was surprisingly alert afterwards and I would recommend books and videos for your daughter to keep her entertained while she is flat on her back in the ICU. (Brooke also enjoyed ice chips and needed vaseline for her lips in the ICU. After surgery, her lips and throat were very dry. These were not offered, but were provided once I asked for them) The heavy pain meds were discontinued the second day and after that Brooke had Tylenol with codeine and valium (to prevent muscle spasms.) By about day 4 I believe, Brooke was on Tylenol only. It was unbelievable!!! For the plane ride home to Portland (with a plane change in Phoenix) We only gave her one dose of Tylenol with codeine, not so much that she needed it, but because we wanted her to sleep. All in all, I was amazed at how little medication she needed considering that it is major surgery. Brooke never did take the prescription meds we were given once she was home. We are now 4 weeks post surgery and Brooke is still weak, but can do things she was not previously able to do, like sit criss cross. We do 3 physical therapy sessions a week (one is a 2 hour session). This enables us to do 4 hours, but only 3 days a week. Home therapy is hard, but she is only 4. Good luck to you and your daughter!
Hi All!

Sorry for not posting sooner, but things have been a little hectic! The good news is that Kaitlyn was finally able to get her surgery on 12/28. The procedure itself went well, but the recovery was not so smooth.

Following surgery, we were never able to see her in the recovery room where she was for an hour. She was apparently very uncomfortable and they were trying to get her settled. When we got to see her in the PICU, she was still in lots of pain. To make a long story short, she spent from noon on Thursday until 8:00 am on Friday (20 hours) having SEVERE spasms in her back. The spasms would come every 2 minutes, and Kaitlyn would scream in pain with each spasm. She couldn't get any rest, whereas most kids are pretty sleepy during that time. They increased the Fentanyl and Valium to the highest levels, but still no relief. She had the entire pain management team trying to help her, but to no avail. Finally, at 8:00 the next morning, Dr. Park looked at her, and determined she was having a terrible reaction to the Fentanyl. He took her off of it, and put her on Tylenol W/Codeine, and she was finally able to get some relief.

The next few days went pretty well, but the trip home was awful. Kaitlyn was vomiting all day (we still don't know if it had anything to do with the surgery, or if she picked up a stomach flu). Needless to say it was an unpleasant flight home for Kaitlyn, us, and the other passengers. We sure were happy to finally get her home!!!

We are now 10 days post-surgery, and Kaitlyn is slowly making progress. She is still fighing some stomach problems, and her energy is very low. She seems to be doing a little better each day, but we can see we have a very long road ahead of us.

I have a quick question for you other parents. Kaitlyn is very weak, which we expected. How long did it take your kids to get back to their pre-operative abilities? Kaitlyn is very frustrated by her inability to stand at the coffee table, where she previously spent lots of time playing. I'm hoping her strength will increase enough in about 4-6 weeks so she can do these types of things, but I'm not sure if that's unrealistic.

Thanks for all of your support, and I'm glad to hear that Maggie and Noah are continuing to do well! They are our inspiration!

Tara & Kaitlyn