A week of PN- update and good news!

 It's been a bit of a tough few days trying to juggle various aspects of my health. Without dwelling on the negatives that we're still working through with the occasional tearful moment I wanted to share some good news (and hope I don't jinx myself!)πŸ˜‚πŸ™ˆ

I've been on PN for 7days now and for the first time in 10months I've GAINED weight!!πŸŽ‰ It's been impossible for my gut to sustain enough calories via my tube for the past few years but with the addition of having nutrition delivered through the PICC line and directly into my bloodstream (bypassing my gut completely) we've managed to finally take a step in the right direction. We're still using my tube to feed into my gut, the PN is just an added extra to boost me even further. For now, I'm awaiting and chasing my next appointment at St Marks to see a leading surgeon, however they're in incredibly high demand so we're unsure of the wait time even via a private appointment. (Mum is currently pushing from every angle to get us seen as soon as possible.)

My weight got to the point where it wasn't safe, my body couldn't and still can't cope running on empty. My heart has shrunk and become so weak that I've had to have heart scans to monitor and track its function closely for over a year. With minimal fat left to burn my body has naturally been burning muscle and tissue from all of my organs nearly this whole year since my weight and strength plummeted, meaning they and their function has been compromised. After one of the scariest years so far, feeling myself weaken and deteriorate with no other option or choice, it feels surreal seeing the number go UP on the scale and knowing that there's still hope left, there's a chance I might feel stronger soon, feel a bit more normal again.

The current plan is to continue on PN until I've gained a total of 5kgs, this will mean I'll be at a safer weight to then go home and wait to see the surgeon at St Marks. Gaining weight will not cure me, or solve any issues- I'm still going to need all of my treatments and procedures alongside further help from hospitals. But if we can reach a slightly safer body weight there's hopefully much less risk.

There's so many other things going off right now that's exhausted me emotionally, but nothing worth having ever came easy and this little 'win' with the weight gain is a step in the right direction. Everything else will have to sort itself out- I'm too busy using my motto 'Find a way, not an excuse' and planning next years shows and adventures for me and Daisy the dinosaur!😊


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