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Liv's Blog

Liv's Blog

Liv's blog is a compilation of posts from the GoFundMe site, created initially by Jess Cope - a long time friend and collaborator with Lasse Hoile during their work on projects for composer and musician, Steven Wilson. Many of the posts will contain moving contributions from Lasse, Vitalia and their colleagues including video clips and photography of Liv's brave progess through her treatments and life at home with her parents. We hope you will learn from their experiences and help to spread and gather support for Liv and other children in similar situations.


Short update

Since last update we have been back and forth to the hospital due to Liv’s tunnel infection (two ultrasound scans and extra checkups for infection and regurgitation of her dialysis program), which turned out to be a Staph infection. So, Liv needs to be checked regularly while still on antibiotics (for three weeks). And since her last operation she is also still on a less-than-optimal more mild dialysis, which is now resulting in her not getting rid of water in her body and tissue, which is now messing her blood pressure up once again. The fun never stops! 2 - 3 hospital visits per week (+double up on even more medication) now is starting to wear again, it was supposed to get less, not more frequent - it’s incredible how much how one person’s (f¥ck!n@) mishandling Liv’s dialysis TWICE, has affected us all and the amount of consequences it has costs…but, move on we must and have too.

Liv is keeping upbeat and joyful as always❤️, she truly is a little trooper, the antibiotics is working and hopefully by the time we go in for the third scan in about a weeks time - she will be good again and be able to go on the full dialysis program so her blood pressure and water in her body can get back to some normalcy as before and under control

And again, just thank you all for the kind and heartfelt support, without it, we probably wouldn’t have gotten this far - it truly does help, more than anyone will ever know❤️

Love from us all here❤️

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Some very, very tired parents here
Some very, very tired parents here

Some very, very tired parents here...

Small update on the last update a week agoLast week I posted a small update on the GoFundMe page (so, just posting a new update here), about Liv and how her dialysis tube was ripped out of her stomach, by clumsy (-incredulous F-ing stupid) mistake, from one of the night carers (Liv needs to be monitored 24/7 since all that happened last year) - and we had to rush to hospital last Sunday night and then Liv emergency surgery Monday morning.

Fast forward to Sunday… Liv is just about to get better from the surgery, still in some pain but was slowly getting better - and then the same person goes and does the same shit again and ‘accidentally’ rips her dialysis tube out!! Exactly a week apart!! WTF!! As if shit hasn’t hit the fan several times over already… FUUUUU(((K!!

We rush to hospital again, and have been her since early Monday morning, they couldn’t operate on Liv until today, she is now in surgery again and hopefully it will go smoothly.

Not exactly sure why I’m writing this, only to share my extreme frustrations maybe, with all of those I never hear from, but also just to say - I don’t think I can take much more of this shit!! Each and every time something happens it sets back Liv’s progress and makes her gradually more worse and time is certainly not on our side in getting Liv back to some sort of normal and positive progress in her development. She needs a new kidney as fast as possible now.

It doesn’t get easier every time something happens, but we try, as much as possible to ‘hang in there’ - and even that sentence is beginning wearing out.

Some very, very tired parents here…