Our everyday
4 September 2017
When tobi is nutropenic we are in charge of giving him daily injections of GCSF which helps his white blood cells to reproduce, you need these to help fight infections..
We are also in charge of daily medications and tobi can have upto 7 different types, 3x a day at different times. We have to take his temperature 3x a day because if he spikes it's straight into hospital to stay as it means an infection is starting somewhere.
We are also in charge of his feeds & making sure his NG tube is always clean & in the correct place. Setting up for this can take around 10 minutes. We also change the dressing on his face regularly.
Tobi carries a bug called ESBL and it basically means he goes into isolation every time he goes into CHOC either as an impatient or an outpatient. He will be a carrier for along time to come too unfortunately. It also means he's immune to almost every normal hospital grade antibiotics they prescribe. So it makes hime Harder to treat. He's also a C-diff carrier which is a bug we all have even if we're healthy, tobi is just effected by it as the Chemo killed all the natural good bacteria in his tummy and there's nothing to counteract it's effects at the moment.
Tobi has also regressed a little in terms of speech and age, but this is only a short term effect of where the tumor was and the treatment he has been through so we see speech and language therapists on a regular basis and use a lot of sign with tobi now.