Gastro Update

Amber's first 24 hours after surgery were always going to be the most critical & she has come through this like a trooper.  I've always said she had her father's stubborn streak.  

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

We've been carefully picking her up now for cuddles & I'm sure she is appreciating the contact.  This morning we have started giving her Neocate formula via the gastro with the goal of being back to normal intake tomorrow.  I'm convinced that part of her grizzling today is hunger but we need to proceed cautiously so as not to overburden her delicate tummy.  I've been given the green light to breastfeed her now but to hold off on the puree.  She takes a lot of comfort from nursing although it is not enough to sustain her nutritionally.  Likewise with her puree - as long as she is still showing an interest in it & it is safe for her to feed this way I intend to keep this going as long as possible.

A dose of morphine has helped to settle her down for a sleep this afternoon.  When she wakes Dylan & I hope to unhook her from all her tubes & give her a bath for the first time post-op although we need to be careful not to get the g-tube site wet.

Katie Archer - our poster girl for Rare Disease Day

I live my life on a daily basis now looking to focus on the "good" things to outweigh the "bad".  By far the best moment we had yesterday was a visit from Rare Gem, Katie Archer, & her supermum, Lisa.
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.