Well we’re through our 2nd weekend at Children’s for this visit. It’s been an interesting week with a bunch of highs and lows.
Earlier this week the hospital had a series of carts come around for “State Fair on Wheels”! Kate got some cotton candy, a “walking” chicken balloon, some finger paints and a caricature done of her! She’s had some happy moments and we can tell she’s getting more and more used to the environment. Her sleep is generally better too.
This week we got a room at the Ronald McDonald house inside the Hospital here. It’s our own private hotel-like room with a real bed, private bathroom and shower. It’s been a nice change from having to live on the pull-out couch in Kate’s room. We have it until Tuesday and we are thinking right now that we may try commuting to and from home to get some sleep in our own bed! Other than for a quick run a couple times, Audrey hasn’t left the hospital grounds since we got in on August 21st.
This weekend has been a struggle at times. We have been clashing with nurses in what Audrey describes as “Nurse Wars”. Personality clashes abounded Saturday and the Saturday to Sunday overnight was bad with orders being ignored. We’re working with our providers to try and get things straight. Ultimately we’re much more involved in her medical care than I think a lot of the ICU nurses are used to and they feel shut-out. We are trying to get them involved in non-medical things but most don’t seem to be able to wrap their heads around that.
Today we had a bit of sobering news. I guess the Transplant Team can run simulations to see if an “ideal” heart were to come up today, where would we be on the list. We were hoping we would be reasonably high, in the top 3 or so. The simulation came back with Kate at spot 6. There would have to be 5 other people declining a heart for Kate to get the offer. With that position, we are likely looking at 6-12 months before the heart. Tough news. It seems that her year at home didn’t help her position on the list as much as we and the transplant team hoped. We don’t regret keeping her out but still wish she were higher.
Ways to help. We setup a Meal Train account at https://mealtrain.com/q42yrr. From here we can schedule visits and food help without getting overwhelmed all at once. We’ll make adjustments as time progressed. Any help is appreciated. Eagan drop-off location is coming very soon.
