Hi all, who still check in here once in a while ❤️
Just another quick’ish quick-fire update from here…
We finally got checked out of hospital two Saturdays ago and got home late. Everyone was so exhausted there was nothing left to do but sleep and before we even had a chance to unpack,then, just two days later, Monday morning, Liv became ill again. Her fever started rising, we called the hospital, and before we knew it we were back. Liv had another urinary tract infection, her third, which meant another long week in hospital. That made it 9 weeks in hospital since the beginning of May.
We got home again last Saturday, only for Liv to have another operation to replace her double J catheter. The old one came out, a new one went in, and they also placed a catheter into her bladder as they still don’t know if she’ll be able to pee properly. More tubes to worry about and more risk of infections while she’s still heavily immunocompromised for many months to come.
From there we went straight to the children’s hospice, where we stayed before when Liv had kidney failure. We’ll probably be here for another 2 to 3 weeks. It’s supposed to be a place to land before we can finally get home and get the help we need, but it hasn’t really felt that way.
Please don’t get me wrong. We are absolutely over the moon that Liv has her amazing new kidney. It’s the greatest gift we could ever have hoped for, and we are beyond grateful. ❤️ But the experience with the hospital system has been incredibly hard and stressful. Words really don’t do it justice.
Most of all, we just want to be home.
The journey is far from over, but Liv is doing better. Recovery will take time, but she’s slowly getting there, and that gives us hope and the strength to keep getting back up every time life knocks us down.
Thank you again for all your messages, love and support. I know I’m terrible at replying these days, but please know we appreciate every single one of them more than words can say.
Love,
L ❤️
