A lot of people with CHARGE syndrome have difficult airways and breathing problems.

I am lucky my breathing is ok but when it comes to surgeries and intubation it is tricky as I have a narrow airway and it is in a different spot than usual.

A lot of people need to be done in the general operating theatres with access to paediatric equipment This can be tricky for me because when they do my gj tube it needs to be done in radiology.

Many charge people have problems with the muscles inside the stomach and bowels. Sometimes with me in particular the peristalsis pushes things back up which is part of what causes reflux. This also caused the jejunal part of my tube to come up into my stomachache. That made me have terrible pain and I ended up in hospital on IV fluids while they worked out how to help me. Last Monday they tried to do it awake but it was to painful and was all looped up.

Last Tuesday I went under. It took 3 hours and my gastro registra was called because the tube was so difficult they thought I would need something else. They also tried to get a new drip or line wich took forever as my veins are very bad.

The tube nurse said they might do the next change under endoscopy with the surgeon and if that doesn’t work I will need a whole new stoma.

We are hoping this lasts longer than a month and that it wont play up on a Thursday or Friday as it takes longer to get things done in the end of the week than it does at the beginning of the week.