Settling In

I’m writing this on Sunday as Kate takes her nap. We’ve been in for 48 hours now and are finally starting to catch our breath. It’s been a challenge for all three of us but we’re starting to see signs of a rhythm.

Friday we spent some final moments making sure Kate had fun with some favorite activities around home. We ate breakfast as a family, walked around outside, swung on the neighbor’s swing one last time. We made it up to the hospital around 10am and got checked in. we initially were put in one of the standard, small rooms (below). We’ve been in these rooms before and they are “cozy” to put it lightly. Still very functional but small. There are two rooms here that are larger corner rooms and made sure to pass the word that if they open up we’d love to get one.

We got settled in, Kate was in a good mood, interacting with the staff and overall pretty happy. Nap-time came……and went with someone becoming Ms. Crankypants and not wanting to try and nap in her new hospital crib.

As the evening wore on, we learned that we would get to move into the “penthouse” suite that was about double the size of the original room (below)! This was a little annoying as we had just gotten done unpacking but we weren’t going to complain. We got moved and settled into our new room without too much trouble.

Kate, was struggling with the day, having everything be new and not home. We got her down for bed and stepped outside for a few minutes of air before going to bed ourselves. Unfortunately about an hour after going down, Kate decided that she wasn’t going to sleep in her bed and would only sleep on Audrey or I. We settled in for a long night, taking 2 hour shifts to try to make it through it.

Yesterday (Saturday) was rough. No one really slept well. The staff are doing our best. The Heart Failure team is great, working with us to get orders written to give us as much control and freedom as possible. I honestly don’t remember a ton from yesterday other than it was bad. We made it outside, and have done so a lot. The staff don’t mind if Kate goes for “walks” in the hallway and stares at them. They definitely are not used to working with a super mobile toddler like Kate.

Last night we needed a better night. Previously we had gone through a sleep training process with Kate that was hugely successful. We’ve had to re-do it again after past hospital visits. We built up the “you are a big girl” and “you are going to do such a great job sleeping” comments through out the day. In the evening, after some drama with nurses and trying to get a blood pressure on a screaming toddler, we put her down and she was able to get to sleep within about 11 minutes or so and she slept through the night! Thank goodness for sleep! With everyone getting a decent night sleep last night, we’re all feeling better today.

We miss the freedom of Kate’s backpack. For over a year Kate’s backpack was a constant companion, with her 24×7 containing her IV pumps and more recently her food pump. Now we have to drag an IV pole around with the same equipment. It’s just a lot larger and more awkward.

Food is going to be tough here. Due to COVID-19 restrictions, they converted a lot of things into staff break rooms. We lost access to the cafeteria, lost access to the family break room and other spots. The Ronald McDonald house has some food a couple times a day but with Audrey’s food sensitivity, most things she can’t eat. Even finding a spot to get ice water for the water bottle is very tough. We get 1 food coupon per day to order off the hospital menu, but it’s institutional hospital food in small serving sizes. I’m not going to go into the “coffee” here. Being a bit of a coffee snob, I am certainly going to be bringing more supplies from home.

We’re trying to put some thoughts together for ways people can help. I promise to share that in the next post!

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