My Grandson hasCF
In a blood test on the mother of my grandsons while she was pregnant we were told the twin babies had markers for CF. Twin boys were born on June 7, 2010. Both were diagnosed with CF and Biliary Atresia. Also, their intestines were twisted and necrotic at each end having come loose from the stomach wall inside their tiny bodies.
Losing Jaden, my grandson
They spent 6 months in intensive care and the larger baby, Jaden passed away Christmas eve at 6 months after 13 surgeries. He was in such pain and burst his stitches from crying so much. His body became septic and he passed away.
Worried about Ashton's health
His twin Ashton got to come home with a feeding tube and a giant scar across his belly (he had 6 surgeries). He's 10 1/2 now. He takes creons every time he eats and liver medicine. Despite all the meds he is extremely jaundice. The doctor is trying to figure out why. All ultrasounds and blood work are not showing any bad results so he is taking antibiotics now which have improved jaundice somewhat.
The doctor thinks there are bacteria in his intestines. He has referred him to a liver specialist. I am worried that's the first step to a liver transplant. He's extremely smart and has just now realized how important his meds are!
I'm doing everything I can for my grandson
I am his dad's mother and have him 3 days a week. I maintain a routine with his meds and meals. I don't think he is getting that at home as his siblings are in charge of him and his care when not in school as Mom & dad are working.
Are you a patient or a caregiver?