When Can't Means You Can

Post written on December 24th about December 23rd.  While the 23rd was hard, Annika had a marvelous Christmas.  Thanks to all for your love!

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Yesterday was a hard day.  It started off poorly when I was grumpy with one of the nurses because she came in at 3:00 am to fix Annika's pulse oximeter, leaving the door wide open so that it woke Annika up.  It was 5:15 am by the time Annie finally drifted off again.  I know the nurse was just doing her job, but sleep has been really challenging for Annie.  She'd only gotten three and a half hours of sleep the night before, so both she and I were so tired that we wanted to cry.  Grumpy is never a winning strategy for me however, because I feel guilty about my crankiness all day long.

I was also kind of grouchy because the room that they moved us into after getting out of the CICU was dirty and small with ugly green painted walls.  I know it shouldn't matter, but the space just felt so claustrophobic and the complete antithesis of what Christmas should feel like.

The truth is that these annoying trivialities were just masking the real source of my discontent.

I wanted to be home.  

I wanted to be home with my children--all my children, including our sweet Brooklyn,  I wanted to gather around our beautiful Christmas tree and drink Eggnog and sing carols and act out the Nativity.  I wanted to hang our stockings by the fireplace hearth, eat Trix, savor meat pie with far too much cranberry sauce, and fill stockings.  I wanted to leave cookies and milk for Santa.  I wanted to gather with family.  Jason's family, my family, all the family.  I wanted to open brightly-wrapped packages together until the family room turned into a kaleidoscope of paper and bows flying everywhere.

I was tired of disappointment.  We have tried to celebrate the holidays at the Stoker cabin for the last three Wheeler Christmases.  Now it's three times in a row that it hasn't worked out.  In 2020, Eli tested positive for Covid.  In 2022 Annika had her initial cardiac arrest.  2024 is happier as Annika has been blessed with a shared heart, but it's still hard to be in the hospital.  My heart feels torn as I want to be here helping Annie have the best Christmas possible while also wanting to be with Talia and Eli and Jason and the Wheelers and my parents as well.

Hospital restrictions won't allow us to gather.  At the moment, only two visitors at a time are allowed in the Cardiac Care Unit.  We were able to reserve a Conference Room for Christmas day, but only from 11:30-2:00, and they told us that we can only have six people there.  We are not allowed to leave the main hospital and gather in the outpatient building either.

It'd be easy to blame the hospital restrictions for my discontent, but the sorrow actually lies much deeper.  

I wanted Annika to be well.

Yesterday was a hard day because December 23rd marks two years since Annika's cardiac arrest.  Our lives changed forever on that day.   In an instant, we went from having a completely healthy child (or so we thought) to supporting a daughter with a failing heart.  While this transplant gives her a new lease on life, yesterday starkly illustrated how all of our lives will never be the same.

For 2 1/2 hours, we learned about her transplant medications, including some really difficult side effects.  In general, a low dose of steroids is anything less than 7.5 milligrams, whereas anything over 40 mg is considered to be a high dose.  Did you know that while in the operating room, Annika received more than 1000 mg of steroids???  Among other side effects, steroids increase your risk of infection, raise blood pressure, increase your appetite, and cause insomnia.  Annika's also received four dose of rabbit thymoglobulin.  For this medication, rabbits are injected with human blood cells so that they produce antibodies against them.  These antibodies are then collected from the rabbit blood and given to transplant recipients to attack and wipe out the recipient's T-cells (the white blood cells that help fight infection and disease.)  While usually only given at the beginning, the effects of this rabbit thymoglobulin stay in your system for at least six months.

While it's super cool that Annika is now part rabbit, it's terrifying to realize how immunocompromised she is.  Her immune system has been suppressed to the point where it shouldn't recognize the existence of an entirely foreign organ.  That's crazy!  But it also makes me crazy nervous.  Annika has a village who LOVES her.  Everyone wants to visit and hug and let her know how much they care.  She wants to hug and love them back!  It breaks my heart that for the moment, this isn't safe.  After some months, the transplant team will back off on some of the drugs and Annika will be less immunosuppressed, but until then our life will look much like it did during the height of the pandemic.  No in-person school, no church, no extra-curricular activities, plus a ton of masking and hand sanitizer.

Her long-term medications have some difficult side effects too.  The tacrolimus is notoriously difficult on your kidneys, so Annika is supposed to drink lots of water to help flush it out.  The tacro has already given her a hand tremor.   I hope that this side effect will go away as her dosage decreases, but the truth is that we really don't know.

For Annika, education was hard because it felt like an extended list of CAN'Ts.  She was super sad to discover that she can't eat grapefruit or pomelos or pomegranates anymore.   Several months ago, we'd talked about what a post-transplant diet would look like: no raw fish, no undercooked meats, no deli meat, no soft cheeses, no buffets, etc.  However, we unintentionally skipped grapefruit and she took it hard, reminding us how the grapefruit from Aunt Christy's backyard is the best fruit she's ever eaten.  Who knew that learning SunnyD has grapefruit juice in it could cause tears?  But it did.  We don't even drink SunnyD.  I think it's just the idea of a life-long restriction that's discouraging.  Other rules: no swimming for a year.  No swimming in hot tubs or hot springs indefinitely.  No traveling farther than a two hour drive for six months.  After six months or so, the radius is extended to four hours until you hit the year mark.  And of course, the animal restrictions are hardest on Annika: a permanent ban on owning reptiles, amphibians, and birds.  

All of the prohibitions definitely contributed to the depressed vibe I was feeling.  After our lengthy education session, I took Annika to an empty common area with a big table so that we could work on a puzzle together.  While we were doing our puzzle, this little girl around the age of six walked up and gave Annika a fifty dollar bill, wishing her a Merry Christmas.  This unexpected act of kindness touched my aching heart.  I choked up so completely that I could barely whisper Merry Christmas back.  Tears flowed as I contemplated the generosity of a stranger.

In this moment, I felt so seen.  I felt how God understood that even though we are so very grateful for the remarkable gift of Annika's heart, it's still really hard.  There are moments when we wish we could go back--back to a carefree life free of medications and restrictions and cath labs and rejection and infection and CAV and PTLD and all the other cardiac concerns.  We have experienced so many miracles and are grateful for every one.  Still, there are moments when we mourn the miracle we wanted most of all--for Annika to be healed completely.  I recognize that her journey will transform her in remarkable ways.  She is already stronger, wiser, and more compassionate.  In the days since transplant, Annika's heart has been so tender.  She has been thoughtful, kind, snuggly, and polite, almost to an unusual degree.  I have no doubt that this transplant has left Annika feeling closer to God and the Spirit.  Whosever heart she shares, it is a remarkably special heart indeed.

Late in the evening of the 23rd, Annika and I went for a stroll to walk off a bit of our sadness and worry.  The long first floor hallway was completely empty, and I encouraged Annika to walk all the way to the dinosaur mosaic at the end.  At first she whined a bit that it was so far.  However, about halfway through the corridor, she started to walk faster and faster, finally breaking out into a jog as I struggled to keep up with Steven (her IV pole.)  As we reached the end, she broke out into this ENORMOUS smile and said, Mom, my chest doesn't even hurt!  Then she turned around and jogged the entire way back.  By the time we reached the elevators she was a little out of breath, but giggling with joy.  It's funny, but I haven't seen Annika out of breath in years.  Her chest has always hurt so much that she's had to stop before shortness of breath could happen.  Listening to Annika's glee as she told her nurse how she ran filled my soul with light.  

This moment showed me the Why.  Yes, transplant has it's can'ts, but Annika's life is now filled with so many cans.  Thanks to her new heart, she can hike mountains.  She can backpack with our family, and play tag at recess.  She can ride a bike and chase lizards.  She can ice skate and sled and ski and play pickleball.  Because of her shared heart, she can run.

Just as George Bailey journeyed from deep depression to unbridled joy over the course of a few hours, I too can proclaim, "Merry Christmas!"  It's a wonderful life.