Day 10 – Video
Hayley woke exhausted and in pain again. It was a tough night. Up & Down
She walked despite the fatigue. When she was walking I noticed a great improvement in her step and her over-all mobility.
She said her pain was about a 7. The acute pain team (Dr. Carney) team ordered a 10% reduction in Hayley’s Hydromorphone. This is one of the reasons she is feeling so much extra pain.
Dr. Shapiro says everything is on track
Hayley has been using her ‘”oxygen exerciser” to help prevent pneumonia from setting in.
Hayley is still taking antibiotics for her infection in the islets.
She has been told if her stomach fluid output is under 200ml (total) tomorrow they will finally consider taking the (NG) tube. This would please her a lot.
She is now on Gabapentin, Tramacet, Benadryl, Gravol and Ativan (every 4 hours) however they had to slow the Ativan, way down because it was making her too sleepy.
The NG tube has been blocked all day so if all goes well and her bowels start working they will pull it tomorrow. This will be a good thing however I would much rather see her wait the extra time and keep the tube in rather than have them pull it and have to put it back in again.
Hayley still has the PICC line in but the tapes they are using are bothering her arms terrible. Seems no glue or tape is any good for Hayley.
Hayley is suffering from extreme anxiety today. Too many wires and cables, too much pain.
Grant has been our nurse for the last 2 days and Grant is made out of everything that a great nurse should be. He has worked excellent with Hayley so much so that we are forgoing the Ativan unless absolutely necessary.
Hayley is very tired right now again she slept most of the day.
She has been nauseous, dizzy and I actually had to bring her back from “The Beach” a short while ago. We were only there 15 minutes and I took one look at her and she was pouring wet and so pale- sick looking. When I got her back to the room the nurse (Grant) immediately hooked up the NG pump and it proceeded to drain about 150ml of fluid from her “gut”. I suspect between the NG tube being blocked off, no food and high meds, all this is a contributing factor.
The pain team is still roaring about medication reduction. It’s amazing how people loose sight of the fact that she just underwent one of the biggest surgeries imaginable. Not to mention she is just 13 years old. I know many adults would not be able to endure what she has endured both now and for the past 7 years. Hayley deserves this surgery to work and work well.