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
