Our first night was spent in a High Dependency room close to the nurses station with all sorts of bleeping machines monitoring her vitals. Not a lot of sleep had from either of us. She's been very grizzly with the discomfort of recovery despite the pain medication taking the edge off. We have not been able to pick her up for fear of hurting her which is really hard when all I want to do as her mother is give her a cuddle.
Initially, post-op fluids were given intravenously for the first 24 hours before starting her on Pedialyte through the new gastro tube at 1/3 rate of her normal daily intake while still maintaining the IV fluids.
We feel very privileged to have been moved to our own room now with bathroom & parent bed. I thought I'd get a better sleep this way but unfortunately Amber has still been uncomfortable, been taking a long time to settle & grizzles while awake.
On a more positive note, the amount of oxygen she had been receiving through the nasal prongs was dropped right down yesterday until we took her off it altogether last night. She spent the entire night breathing on her own & maintained a really healthy rate. See - I knew she had a stubborn streak. Miss Independent wanted to show us she could do it on her own.
|Snuggled with Lamb Chops watching the Gigglebellies on You Tube|
|Katie Archer - our poster girl for Rare Disease Day|
I made Facebook contact after reading Katie's story on the Rare Disease Day website. Katie has Batten Disease - another "nastie" from the group of Lysosomal Storage Diseases. Her story really struck a chord with me as, although Katie is now 4, the progression of her disease bears many similarities with Niemann-Pick. Due to the rarity of both conditions it is difficult to connect locally with others in the same situation so meeting Katie & Lisa was such a special moment. It really reinforces the catch phrase "Alone we are Rare, Together we are Strong". I could really relate to many of the things Lisa expressed - particularly living in the "here & now" & appreciating what we have rather than dwelling on the loss. Thank you so much for making the effort to visit us - it really means a lot. What special people.