Fourth of July at Primary's

Great as it was, July had its hard moments too.  I know I already blogged about it here, but Annika landed back at Primary Children's over the Fourth of July.  It seems she has a fetish for holidays!  Even though it wasn't nearly as serious as Christmas, being back was still traumatic for Jason and me.  Her heart rate dropped way too low (upper 30s, low 40s), and we didn't know why.  Then, when they changed the settings on her ICD to pace her at 60 instead of 40, it was pacing her way too much--40% of the time.  Her heart monitor alarm was dinging constantly, particularly at night, since the monitor didn't know what to make of the strange arrhythmia every time the pacer kicked in.  Instead, it would flash phrases like Asystole or R on T PVCs, neither of which are very comforting.  Needless to say, I didn't sleep well.  Like a compulsive addict, I would get up to check the monitor every time it went off (every five to ten minutes), even though I knew there were nurses outside monitoring as well.  My struggles with anxiety may not be new, they have certainly reached new levels over the past year. 

On the positive side, from Annika's perspective, the hospital was fun.

After all, who doesn't love a good slushie?

Our friends Julie and Stephen dropped by and brought the most amazing treats from Gourmandise.

Julie was adorable as she hopped on the bed and listened intently as Annika taught her how to play Minecraft.

Sunsets were beautiful, and despite the dinging, Annika slept well.

I'd really hoped that we might be released in time to celebrate the Fourth of July, but once it became clear that wouldn't happen, we did our best to bring the Fourth to Primary's.  Talia pulled off our classic star hairstyle.

The nurse dropped off a Fourth of July craft for Annika to paint.

She "accidentally" got paint on her nose...

...then used the dirty paper towel to wipe it off!  (The second part actually was an accident.)

Aunt Callie came by with an entire bag of Fourth of July cheer.

Naturally, the slingshot was the favorite.  (Not to worry--the ammunition was made out of felt.)

Hanging out with her big sis.  We were under strict instructions to try and have as "normal" of a movement day as possible.  It's kind of tough when you have to carry around a monitor and can't go outside, so we walked a lot of halls.  At least the hospitals have interesting pedestrian walkways.

This looks really bad...but fortunately wasn't.  Her toy car rolled under the desk, so she was trying to fish it out.  We were in the Eccles Outpatient Building, which was empty due to the National Holiday, so at least we weren't making other people nervous.

I guess family together time is good no matter where it happens.  We certainly missed Eli, who was still at FSY.  He called the first night feeling upset to be far apart with Annie in the hospital, but once assured that she was okay, he settled in and had a great time.

The only time Annie ever slows down enough for a pedicure is while she is in the hospital.  Fun colors.

Nice stripes too!  She and Jason matched as they bonded over Minecraft.  (She loved the X-box most of all.) 

The branch president and his wife from the LDS branch at Primary Children's dropped by as well.  When they heard Annie was planning a movie and popcorn night for the Fourth, they came back with this cute blanket.

As night fell, we headed out to the third floor balcony to try and see fireworks.  In the end, the sky bridge blocked most of the view.

On the bright side, we did get to see our good friend, Jane Damstedt, who was working and stopped by to say hello.

In truth, it was a very special, almost sacred, experience to be there on the roof with all of these kids who are courageously battling serious illness.  Annika made a friend her age right away.  It was fun listening to them openly discuss all of their medical issues right along side their favorite movies and books.  They could relate and share with each other in a way that they can't with most peers.

As mothers, we chatted a bit as well.  As I listened to this Mom talk about her child's experience with leukemia and waiting for a bone marrow transplant, it seemed like the scariest thing in the world to me.  Yet as I shared a little about Annika, I could tell that she felt our story was equally frightening.  Somehow, we each gather the strength to deal with the challenges we must.  

Leaving the rooftop, I realized that even though we had missed out on the fireworks, I'd witnessed something far greater.

One other fun story--Annika's night nurse on the Fourth was Devin, the same nurse who helped Annika the evening before she went home in January.  Looking back, it was nearly six months to the day since they'd last met.  She remembered him and his Pokemon scrubs, and they bonded over their shared ADHD superpowers.  I'm so grateful for all the amazing people who have continue to watch over Annie!  I know we speak of a medical team, but sometimes it feels more like a medical army.

Leading the charge is Dr. Lal who has spent a great deal of time with us over the past months trying to puzzle out Annika's medical condition.  Long story short, they are backing away from the diagnosis of Hypertrophic Cardiomyopathy to a diagnosis of Undifferentiated Cardiomyopathy as they continue to hunt for what's really going on.  After I asked a question about her specific gene mutation, Dr. Lal went home and researched it that evening, coming back in the morning to share what he'd learned.  It means so much to feel heard and valued as a partner in your child's care.  In the end, we lowered the dosage on the beta-blocker, which returned her heart rate to a more normal range, plus altered the settings on her ICD to pace her at 50.  This seems to be the Goldilocks sweet spot for now--neither too much nor too little.  We added electrophysiology to our cardiac team, so Annika now meets with both UCHAMP and EP.  In fact, knowing that we had a lengthy family vacation planned, Dr. Lal arranged his schedule so that we could get a comprehensive cardiac work-up with both teams before we left.  Truly, we are SO grateful for the compassionate care.

Plus, Mermaids.  Thank you, Primary Children's, for blessing our family.