Checking in…

A huge thank you is going out to everyone who is supporting us. There has been a lot of support from friends and family. People have come by and hung out in the park at Children’s to say hi, others have brought food, still others are helping with gift cards for food delivery services. Even reading and showing your support in FB and/or this site is hugely helpful. We really appreciate the support so Thank you!

We are just past 21 days in the Hospital now. Kate is doing an amazing job getting into a rhythm. The seems to be really enjoying seeing and interacting with more people! It’s amusing that she’s getting more interaction with other people in the hospital than out, but I guess that’s the strangeness of 2020 and COVID-19.

Audrey and I are getting into a rhythm. We enjoyed out room at the Ronald McDonald house inside the hospital but we gave that up and are commuting to and from home now. We have some extra driving and a little less sleep but we get to sleep in our own bed! We are super lucky that the hospital is only about 25 minutes away so we can do this. On a typical day, we get up around 6am, Audrey heads in to the hospital, getting there by 6:45am. She arrives just before shift change to let her check in with the night nurse to see how things went. Dave starts work from home, or occasionally his office and will head to the hospital around 3pm. We are there until Kate goes down around 8pm. Wash, rinse, repeat.

Frustrations are still frequent. No one at the hospital is empowered to do anything to solve problems. It’s a big huge bureaucracy designed to minimize legal risk. Everything moves at a glacial pace and it’s frustrating how little control we have. In general the staff are helpful and most try but when problems arise, it’s a big headache.

On a happy note, last time we talked about Kate’s place on the list. When we came in, she was #6 in line for a theoretical heart that was put in the system as a simulation. Just after the last post, they re-ran the numbers and she was already up to #3. This is huge! Just this week we learned that there have been two calls for Kate and she was #3 for real hearts. I’m not 100% clear on if both hearts were taken but one of them was passed on by #1 and taken by #2. Kate was one away from getting it and now she’s hopefully moved up a spot if that exact heart were to be offered again. We’re hoping this will be a shorter stay than the 6-12 months we talked about last time but we’re just taking it day-by-day.

Thanks again to everyone who is helping out. If you are in the Twin Cities and have an hour to spare some afternoon, we’d love to see you. The hospital is super isolating and it’s fun to see new faces! We can usually get all 3 of us out to the Children’s Hospital park for an adventure.

If you can help with a visit, food, please put your name on our MealTrail Calendar at https://mealtrain.com/q42yrr. We are using this to help spread out the assistance. We only have so much space and a limited amount of time when we’re not tied up with medical stuff.