Ups and Downs

I composed this a couple days ago but decided not to post it.  Good news is that Annika had better days on Sunday, Monday, and Tuesday so we are on our way to Omaha.  #feelingblessed

***

It's been a bumpy road.  

When we arrived at the Cardiac ICU two years ago and were placed on ECMO, I recall one of the doctors giving us some advice.  He warned us to prepare for a roller coaster ride full of ups and downs as we navigate Annika's health journey.  In truth, Annika's journey home two weeks later was largely uncomplicated.  From the low point of ECMO, things got progressively better.  I remember feeling quite lucky that we'd skipped the giant dips he referred to.  I felt grateful that ours was a kiddie coaster.

Reflecting back, I realize that I wasn't taking the long view of her journey.  I think we are riding Cannibal at Lagoon.  After a smooth elevator ride to the top (birth to age 9), there's that terrifying drop (her cardiac arrest.)  We made it through that experience and had a gentle pause, but there is still lots of coaster left.

Photo snagged from Lagoon's Facebook page

When Annika's doctors requested she come to the hospital for evaluation on Wednesday, both Jason and I felt ready to list her for transplant, even if this inpatient workup felt like a bit of overkill.  It had been a long process coming to this point of acceptance.  As soon as we mentally and emotionally arrived at this spot, the roller coaster took another wild turn.  Dr. Lal sat down with us to explain that the team highly recommended that Annika be listed as Status 1A.  Status 1A is reserved for the sickest heart failure patients who are waiting for an organ in-hospital.

We were shocked.  I hadn't foreseen this unexpected twist.  Annika seemed so healthy.  However, Dr. Lal explained how out of all his heart failure patients, he worries more about Annika's specific condition because her heart is so unpredictable.  Her heart stopped while roughhousing and tossing leaves with a friend.  She wasn't doing anything crazy, and her heart rate wasn't very high.  When this happened back in January, her dose of beta blocker was small.  In response, the doctors tripled the dosage to blunt her heart rate and manage the arrhythmias.  This time, however, she was already maxed out on meds.  They are running out of options to protect her heart.

Head spinning, I just wanted to break down and sob.  In envisioning heart transplant, I had this scenario in my mind where Annika would be living her best life and skiing up at Brighton when "the call" came.  The last time they talked with us about transplant time frames, they told us it could be a year or two.  Now they are talking about weeks.  It feels so fast.  Plus, this isn't how we anticipated spending the holidays.  The deja vu from two years ago is unsettling.

When Annika went to the cath lab later that day, the pressure values came back slightly better than anticipated.  We were able to negotiate for some time.  Annika could be discharged Saturday in time for her cousin Eila's birthday party and we could spend Thanksgiving together as a family.  The team would meet on Tuesday to discuss whether she needed to be listed 1A or if she would be okay waiting longer as a Status 1B patient.  I was thrilled.  We'd been planning to do Thanksgiving in Omaha, and I wanted nothing more than to escape town and feel normal for a while.

Coming home was lovely.  Our Christmas tree is beautifully decorated, and Annika immediately settled into her perch by the heater, pulling out colored pencils to draw.

Eila's Harry Potter party was also amazing.  The kids made potions, got divided into houses via M&M filled sorting hats, played Quidditch on the tramp, cast spells, painted wands, made brooms and more.  Yet it was also kind of sad.  Annika's chest hurt severely when she tried to battle the Whomping Pillow.  She looked soooo tired. She couldn't play Quidditch or keep up with any of the active things the other kids were doing.  Instead, she snuggled in an arm chair with Pickles in her lap and watched.

Pickles time is the best, but this was a huge change.  For the first time, Annie seemed like her heart was really sick instead of it being largely invisible.  That night we all went out to eat at Chile Tepin to celebrate being together.  It was delicious, but Annie's chest hurt significantly after walking a quarter block downhill to get back to the car.

Two days ago I wrote that we were toeing the line on our list of transplant criteria.  Now I would say we've definitely crossed that line, including "feels substantial social isolation from peers related to inability to participate in activities."

Like I said, it's been a roller coaster.  Yesterday morning I was excited to send Annie back to school on Monday and Tuesday to see her friends.  I was planning to continue my orientation at work.  Today I emailed Annie's teachers and my work to let them know we wouldn't be there after all.  While we haven't made a final decision, Omaha feels dicey.  It's far away, and Annika would have to take it soooo easy.  If she doesn't feel significantly better today, I think we may need to call the hospital and let them know that we are ready to come in sooner.  

These are sad days around here.  While we've been trying to initiate conversations with Annika about transplant for a long while, she's been in denial.  She never wants to talk about it and changes the subject as soon as possible, closing down with "I don't want a transplant."  This suddenly feels so real and so sudden.  She's overwhelmed and angry and sad and scared.  I would be too.  Imagine knowing you are going to miss Christmas.  Imagine missing out on your role as a rapping shark in the school play and Peter Breinholt's Christmas concert and the Christkindlmarkt and Christmas lights.  Imagine how scary it would be to face this kind of surgery.  Understandably, Annika doesn't want this, but I don't know if we have any better options.  I want her to have a voice and feel like she has ownership and autonomy in this decision.  After all, this is her body.  But frankly, it feels like her heart has decided for her.

If you are the praying kind, please pray that our little girl can feel peace.  I have felt some spiritual confirmation that this is the right course of action, but Annika deserves to feel that too.  

***

Update: prayers are being answered.  Annika is feeling much more peace and moments of joy, even with the understanding that transplant will happen.  We have much to be grateful for in this season of Thanksgiving.