Stacey's last 7 days, life with a metabolic/mitochondrial disorder

Last weekend gone, started look very unwell, bloated, then began being, sick, not just sick but projectile vomiting. She was becoming very poorly, a phone call to our metabolic unit, then onto the local hospital, upon admission, the same Dr who managed Kristin 15 years earlier was on duty, which was a relief, as he knew the family.

He suspected a number of issues, firstly she was acutely dehydrated, high temp and dry, so IV's administered, her Potassium levels were dangerously /life-threatening low.

To relieve her from further suffering, her gastrostomy was attached to bile bag (filling at 250mls and hour), as she was vomiting bile, suspected was bowel twist, or and more likely, acture gastritis, which has caused metabolic decompensation/mitochondrial crash.

She was also in the room, next to the one kristen occupied for 3 wks before, before being transfered and died a week later at the Royal Manchester Children's Hospital, Pendlebury.

By Tuesday night, Stacey was being Transfered to Pendlebury, to be under the care of the metabolic team and surgical team, transfer was not without incident, thankfully she was in an ambulance at the time, as I was travelling behind. She began to siezure, twice, mediciation were administered via i.v. and oxygen administered.

Upon arrival at Pendlebury, she was quickly seen, by both metabolic and surgical teams. After various assessments and many bloods test, canulars, in both hands and ankles, it was more or less agreed, she had an acute virus, that had lowered her ability to fight, thus causing the metabolic crash of her biochemistry.

By Friday this week, she had improved, stopped vomiting, blood biochemistry improved, we came home Saturday morning. After 500mls of i.v fluid an hour.

We are slowly building her milk up again and she is back on full medications again.

Just goes to show, no two weeks are the same, and you cannot take your eye of the ball. Her mitochondrial have been further damaged and we have been advised to expect further problems as a consequence.

Thank you for reading,

Love Paul & Rach xxx