Hospital Life

Here's an update that I started on Friday.  I'll get a more current one later, but the general theme is the same.  Despite a couple of nasty migraines, we are doing well and just hanging out waiting for a heart.

***

Well, it's been 90 hours since we checked into the hospital, but who's counting?  I feel a little stir crazy, and I've been able to spend time outside every day, including working two 12 hour-shifts at a different hospital and sleeping at home twice.  I can only imagine how Annika must feel.  Primary Children's is doing an amazing job making it feel as fun as possible, but it's still hard.  She wishes she could go home.  Me too, girl, me too.

In the meantime, here's a photo journey of some of the better parts

Checking in.  While most of her stuffies had to stay at home, she brought both of her dragons to keep her company. 

She handled her initial blood draw like a champ.  In fact, she did so well with them that she opted for a daily poke instead of getting IV access where the tube has to stay in all the time.

One of her first priorities was to make a how-to video for drawing a tiger.  She had me record it so she can start a Youtube channel.  I'll let you know if we get it edited and published so you can check it out.

Jason took this picture as he came up after work.

Talia joined as well after her orchestra concert.

We headed upstairs to play some Christmas carols.  I love that they have a piano available!  Yesterday I brought Annika's piano books up and she even practiced a bit.

Playing along with her imaginary violin.

Goofing off as we say goodbye.

Here's Annika sending a transmission from her CardioMems the next day.  Shortly before Thanksgiving they inserted this tiny sensor (the size of a paperclip) that lives in her pulmonary artery.  When she lies on this giant "pillow," she can send a remote transmissions of the pressure readings, kind of like a tire gauge.

All done!

Hanging with Eli.

As for Talia, our tired Senior chose to take a nap on the floor.  (This room was pretty small, so places to stretch out were limited.)

Bedtime.  We told the cardiology team that quality sleep was a high priority for us, so they are letting Annika skip her 4am vitals, plus phlebotomy is supposed to do blood draws after she wakes up.  (I had to gently remind them of this when they came in at 5:30 this morning.)

In general, Annika's liked the hospital food okay.  Each morning she orders an omelet with spinach, onion, mushrooms, cheese, and bacon.  It smells amazing and she devours it all without sharing a bite.  For this lunch she got fettucini alfredo with shrimp.  I think she liked it, but not enough to order it again.  Personally, I just like listening to her call and give her menu preferences.  It was scary at first, but she's getting more comfortable picking up the phone and dialing.  #lifeskills

These first days were filled with a LOT of Minecraft.  So much that we may have had to go through a period of detox because she was becoming super dysregulated and wasn't able to switch gears when providers came into the room.  I may or may not have taken the X-Box controller home from the hospital and brought it home for three days until she earned it back.  It was a bold move, but I think it was a good choice.  The following days were so much more creative and positive.  Now she can have Minecraft for an hour a day again, but has to "earn" her play time by doing some other things first, like practicing 15 minutes of piano and going for a walk.

We didn't love our first room because it was so tiny, but we still did our best to decorate by putting up these amazing garlands that NomiAnn made and sent.

Hunting for the Elf on the Shelf.  That Elf's been up to mischief for sure!

Out for a hospital stroll with Mom.

Someone made these adorable crocheted plushies.  Annika adopted a snowman to give to Violet for her third birthday.

Nose to nose with a gnome in the gift shop.

Enjoying the cute little plush snowflake given to her by her friends Ilse and Ehrhardt.

Upgrade!  Since Annika may be here for a while, they were able to move us into some larger accommodations.  Hooray!  It feels SO much roomier and accommodates guests much better.  Thanks to Callie for helping us transfer over.

Other fun moments--hanging with our new bishop, Eric Buell.  It's pretty awesome when your bishop happens to be a pediatric anesthesiologist.  

Pet therapy!  Annika was so excited to have Guiness come visit.  I was at work and didnt' see, but apparently Guiness is massive and great for cuddling.

Jason, Annika, and some of the care team made the most beautiful snowflakes!  I love how they make the room feel.

With Minecraft on hold, Annika got super creative and started making dozens of unique birds that each have their own name and personality.  Apparently the Firebirds battle the Waterwings, so I have to be careful to separate them when they get stored away.  For a long while they have taking over the couch (that's where the nest is), but I finally had to insist on getting my bed back.

Last but not least, mailing a letter to Santa.

Hope it makes it to the North Pole, even (or especially) from Primary Children's.