A new tube

Lilian has had her feeding tube for a while now. It's the kind that sticks out and has a tube always attached. This is a nuisance and when kids get older can be dangerous as it can get caught or pulled very easily. Even though Lilian is feeding a lot better now a days she is still dependant on the tube. We decided to "upgrade" it for a more hidden version that only has the tube attached when it's required. Otherwise there is just a plastic plug protruding from her tummy. It's a much neater system.

Unfortunately Lilian required a full operation to remove the old tube. This means the extremely risky general anaesthesia (GA). Thankfully Lilian has never had serious problems with GA in the past. She's very difficult to manage whilst under GA but her doctors have taken meticulous notes that we have copied for future reference. We pulled out the bunch of notes and handed them to her anaesthetist who was extremely surprised but equally thankful as they now had some key information that would make a big difference to how they dealt with Lilian.

All in all the operation took less than an hour and went very well. Lilian was managed successfully by her team and they only had a few problems with breathing that were soon overcome. Lilian woke up in her now typical grumpy mood and just wanted cuddles with Daddy. She stayed on the ward overnight and was soon sent home.

Lilian recovering from the operation

We were shown how the new tube works on the ward and it's actually very simple. You need to keep the site very clean and there are weekly maintenance tasks but overall we're very happy. It may also have a psychological effect on Lilian as is the tube isn't there all the time she may forget about it. Who knows. Watch this space.

Lilian's notes for Kings Hospital for 2013 only (she has a lot of shelf space in medical records)