6..."going on 7" if you ask her.
Teeny weeny little thing...barely weighing in at 20 kilos.
A Cystic Fibrosis patient who has a multitude of respiratory and GI issues and has been admitted to our hospital 64 times since birth.
An ex 24 weeker, in-vitro firtilazation, a "miracle baby..."
High functioning Autism and also diagnosed with OCD
I love her
She is a quiet storm
She looks so small lying in the bed hooked up to a pulse ox, TPN, lipids, IVF and G-tube feeds
But she is so brave
She endures countless procedures,
Endoscopy after brochoscopy after colonoscopy.
Lab draws, respiratory treatments, vitals signs, assessments
She is cooperative through it all, and loves it when you let her do help with flushing her port-a-cath
Admitted this time for bloody stools
Endoscopy revealed gastric varices
Her time is near, the doctors tell us
and her liver is failing
H:H critically low
Transfusion after transfusion
Her mother is trying to hold it together
Trying to hold on to her "Miracle baby.."
I leave work in tears
Thinking...what will happen to this little brave soilder once she gets tired of fighting..
She is my little "miracle patient.."
And she is so dear to me...