Things I want to do when the virus is gone

This pandemic has a lot of people feeling sad and missing their normal routines. I try to be positive so here is a list of things I would like to do when the pandemic is over and things I would like others to do.

First I want to go and take a big swim at the beach or a pool. After this I would like to go on a holiday with all my friends and family. I also want to celebrate life while remembering those no longer with us.

I want everyone to stay safe and practice good hygiene I want people to remain kind and loving to others.

I want to remember this time and be able to say I made it just like I got through all my other problems. I also need to remember the world isn’t just me.

I want to be able to see some of my friends I haven’t seen all year and go places without worrying about people not doing the right thing. I want to not react to every cough I hear and just relax.

Until that time we all need to do the best we can and try not to worry to much about everything especially things out of our control.


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.

Staying safe in uncertain times

Australia is in the middle of a second wave of COVID with most of the cases in Victoria. In my state and area we are getting daily cases and watching closely.

Last week I got a mild cold and had to get tested. There was a huge queue to get into the testing clinic but it was a quick test. A long swab goes up the nostrils and into throat and it can take a day or more for results. I came back negative and couldn’t leave the house till it came back. I would rather stay home than risk getting others really sick.

The thing that gets me is that some people still don’t follow the rules. I get that there are some that are unable to wear a mask but people that can should. You can get nice cloth ones which are nice and snug over the face. Good hygiene helps to.

For me I am in the semi vulnerable category. So while I am mostly healthy Drs believe the virus would mess with my gut and reflux. I am positive I will be ok but want everyone to stay safe.