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.

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

Some very, very tired parents here...

Lasse Hoile

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…

In hospital again
In hospital again

In hospital again

Lasse Hoile

We really wanted, and were hoping, to do a more upbeat update for a while now - but exhaustion never seems give us a rest.

Last time Liv was in hospital for her checkup the doctors decided not to give Liv her usual shot of EPO (erythropoietin, is a hormone produced by the kidneys that stimulates the bone marrow to produce red blood cells), because her blood numbers looked, sorta OK! Which we didn’t understand because her daily routines became gradually worse, as she normally does when the numbers go down, and no EPO, so her energy hasn’t been where it would normally be and on up. And that means much more energy that we have to put in, and as she doesn’t want to do much - it’s been some pretty hard weeks.

Then Sunday night - a night watch that we have at home, each night, from 10pm - 6am as Liv needs to be monitored all the time during dialysis - her night carer accidentally, somehow, ripped Liv’s dialysis tube out of her stomach!

Obviously these things do happen, and a lot with kids (they say here) but also just the last damn thing we needed. So we had to rush to hospital and make sure there was no infection happening, and this morning Liv went into surgery to get a new tube inserted. And she got a shot of EPO (and morphine, fentanyl and others for pain management).

We are still in hospital, and Liv is on a mild easy dialysis for the night, we hope to be able to go home again tomorrow. Luckily everything went very fast and very well and Liv is doing better, as much as she can, under the circumstances.

It’s our little summer vaycay, away from home for a couple of days which we haven’t been since coming home from Hospice in the winter.

On a more upbeat note - the incredible new space for Liv is almost and completely done, we only need a few touches, and we can’t wait to do a proper update with pictures and videos to show how amazing it is for her - and us too. We are so happy and so grateful for all the amazing and heartwarming help all of you have given us. That is something that will always stay with us and knowing that it got us through a damed hard period in our lives.

Love from us all