Transplant in Numbers

It's hard to believe that it's been more than a year since Annika's heart transplant (15 months and 11 days to be precise.) It's been over three years since we started this heart journey. (39 months and 3 days if you really want to know.)

I guess that sums it up right there. For a gal who honest-to-gosh recently asked an app to calculate my age,  it's pretty ridiculous that I could calculate those time frames without any mental struggle. Life revolves around those landmarks. It kind of feels like I should be able to "get over it" and move on, but the truth is that I still think about Annika's heart constantly. Obsessively. Probably unhealthily.

The heavy truth is that once you've been through such significant medical trauma, it is exceptionally difficult to stop being on high alert. Even when the immediate threat is gone, your body still floods with cortisol. Logically I know Annika is doing remarkably well, but worry cozies up right next to gratitude. My heart beats hope laced with fear.

I am ready to re-claim my identity as more than a medical Mom. As part of my effort to both declutter and de-medicalize our lives, I've decided to scan and then get rid of two enormous binders of insurance statements and bills that we have collected over the past few years. I'm digitizing them as part of our family history, but I don't need to keep these giant physical reminders perched beside my bed each night.

Before letting this physical record go, I made a giant spreadsheet and categorized the 491 medical statements. Digging into this record has helped me better understand and appreciate Annika's journey. Honestly, it's helped validate my rather overwhelming feelings as well. No wonder I feel messed up! It's been a lot. I'm giving myself more grace. It's okay if it takes significant time to process and heal.

Most of all, in revisiting these records, I am astonished by Annika's bravery and courage. In a few short years, she has been through more than most of us will endure in a lifetime. Ever resilient, she handles it all with strength and humor. If I need a guide to help me move on, Annika can lead the way.

So with all that, here are the binders in numbers. Between 2022-2025, our warrior Annika faced:

• 5 days on ECMO
• 54 days in the hospital
• 2 Life Flights (Billed as an "Air Ambulance")
• 6 Emergency Department Visits, including one resuscitation
• 45 Echocardiograms
• 19 EKGs (electrocardiograms)
• 3 MRIs
• 10 ICD interrogations
• 3 rounds IV Immunglobulin therapy
• 3 rounds of injections to treat keloid scarring
• 2 rounds filgrastim for low neutrophil counts
• 2 Exercise stress tests
• 3 Pulmonary Function tests
• 1 Blood transfusion
• 46 lab draws (the actual count is higher because that doesn't include many of the inpatient labs) 
• 22 surgical procedures, including a heart transplant!

As Brooklyn might say, Annika, you're a legend! You've gone from being terrified of lab draws to telling jokes with the phlebotomists. You know how to advocate for yourself (Buzzy please), but you do so with respect. Most importantly, you are taking wonderful care of your special heart. With each good choice you honor the life of your donor. We are proud of you, Cheesecake!

Annika may be legendary, but the medical bills are too. I tallied up all the billed costs and came up with the grand sum of $2,367,380 plus change. Wowzers. Also, just in case you are curious, the largest single bill was for $832,930. This conglomerate bill from Primary Children's included subcharges for sundry services, including "cadaver heart acquisition." Sometimes life feels surreal.

These giant medical binders, meticulously organized by date, helped me grapple with a situation that felt so scary and completely out of my control.  While these binders  may harbor hardship and fear, they shelter even greater feelings of gratitude. The pages are littered with the names of so many caregivers who saved our child. I see the names of our transplant team: Doctors Lal, May, Milligan, Kalb, Chen, Molina, and Etheridge. I discovered that Dr. Ploutz was there on Christmas Day, 2022. I have very scattered memories of this time on ECMO and don't recall meeting her, but it means a lot to know she was there. There are beloved ICU doctors like Dr. Goldstein and favorite anesthesiologists like Dr. Christensen. There are those who have helped Annika navigate her journey emotionally, like Dr. Christina Suorsa-Johnson, and our PCPs, Dr. Sharon Schriewer and Dr, Lisa Samson-Fang. Even more humbling are the dozens of names we don't recognize, representing hundreds of people whose names don't appear but who still played a part in saving our daughter. The care techs, the respiratory therapists, the music therapists, the physical therapists, child life, dietary services, environmental services, not to mention Every. Single. Nurse.  The list goes on an on.

Before signing off, I want to take a little time to break down one category--those 22 surgeries. We have so much gratitude to each surgeon for returning our daughter safely to us.

12/23/2022	Skarda	ECMO Cannulation. This initial crash onto ECMO was a last ditch effort to stabilize Annika's deadly arrhythmias.
12/24/2022	Russell	ECMO Cannulation. The next day they had to add a second venous return into her jugular to help balance out the arterial and venous blood flow.
12/24/2022	Martin	Atrial Septostomy and Heart Catheterization. Our neighbor MaryHunt Martin performed Annika's first heart cath and put a hole between her atria to balance out the pressures.
12/26/2022	Skarda	ECMO Cannulation. When blood clots started to form in Annika's ECMO circuitry, they decided to replace the tubing so that the clots wouldn't break off and cause a stroke or DVT. In the end, the clots broke off anyway, but fortunately Annika's brain was saved.
12/28/2022	Barnhart	ECMO Decannulation and arterial blood clot removal. Apparently those blood clots headed to her leg since they discovered them during decannulation and fished them out of her femoral artery.
1/3/2023	Niu	Implantable Cardioverter Defibrillator Placement. Our electrophysiologist Mary Niu placed an ICD to shock Annika's heart if it went into a dangerous arrhythmia.
1/3/2023	Gray	ASD Closure. As Annika's heart pressures stabilized, Dr. Gray went in and surgically repaired the ASD (hole between the atria) that MaryHunt created on Christmas Eve
3/30/2023	Park	Bronchoscopy, Laryngoscopy and dilatation. Our ENT Dr. Park went in and surgically excised granulation tissue that had built up in Annika's airway following her emergency resuscitations.
4/27/2023	Park	Follow up Bronchoscopy. Because the airway is so critical, Dr. Park followed up the initial excision and balloon dilatation with two more bronchoscopies to make sure that the granulation tissue didn't return.
12/15/2023	Park	Bronchoscopy/Laryngoscopy. This final bronchoscopy gave the all-clear that Annika's airway looked good.
12/15/2023	Martin	Heart Catheterization. On that same day, MaryHunt performed Annika's second heart cath to see where her heart was trending.
12/15/2023	Niu	Place new ICD. While Annika was under anesthesia, Dr. Niu replaced Annika's ICD with a different model that included both atrial and ventricular leads to allow for more natural pacing of the heart. This upgraded ICD would end up saving Annika's life twice.
11/22/2024	Martin	Place CardioMEMS device. During her third encounter with Annika's heart, Dr. Martin placed a CardioMEMS device that can track the pressures in Annika's pulmonary arteries in real time, sending transmissions back to the hospital.
12/14/2024	Griffiths	Heart Transplant (Harvest). This one is so hard. It's also not Annika's surgery, even though the medical costs come to us. Dr. Eric Griffiths was the surgeon who removed the heart from Annika's donor and flew it back to Primary Children's. We are grateful, but it is still so sad.
12/14/2024	Hobbs	Heart Transplant. This is the hopeful side of transplant. Dr. Reilly Hobbs performed Annika's heart transplant and removed her ICD.
12/17/2024	Eckhauser	Mediastinal Washout. Annika met a third transplant surgeon when she suddenly lost huge amounts of blood out of her chest tube several days post surgery. Dr. Eckhauser raced in to open her up for a "chest exploration" right at the ICU bedside as a Massive Transfusion Protocol was called over the hospital speakers.
12/17/2024	Hobbs	Mediastinal Washout. Even though he was technically in another surgery, Dr. Hobbs popped in during this emergency procedure to assist.
12/27/2024	Bloom	Heart Cath and Biopsy--2 weeks--Low levels of Class 1 Antibodies detected.
1/13/2025	Bloom	Heart Cath and Biopsy--4 weeks
1/30/2025	Boucek	Heart Cath and Biopsy--6 weeks
3/14/2025	Martin	Heart Cath and Biopsy--12 weeks--Low levels of class 2 DSA Antibodies detected. Prompted IVIG therapy.
6/11/2025	Bloom	Heart Cath and biopsy--6 months
8/4/2025	Cohen	Small bowel endoscopy--a desperate attempt to understand the cause of all of Annika's abdominal pain.
12/15/2025	Martin	Heart Cath and Biopsy--1 year. True confessions--we adjusted the date just so that we could see MaryHunt again. I know she's everyone's favorite, but I feel like we get dibs since we loved her long before we knew how phenomenal her professional skills.

Annika, you really are a rock star! I hope you feel proud of all you have faced with courage and a smile. In the year following your transplant, I counted 99 days where you received some sort of medical care, Miss Annika. That's a lot of appointments and labs! Yet through it all, you rarely complained, especially if bribed with grapefruit gelato.  Mostly you were just anxious to get back to being you. Your heart is pretty remarkable! Thanks for sharing it with the world.

Valentine's Day Plus

I'm nearly caught up on this blog--yippee! I know the only one who really cares, but it's gonna feel great to have Valentine's Day blogged before St. Patty's Day arrived. Heck, I might even make it before Pi day!

For our family, Valentine's Day is pretty synonymous with Cupid's Crazy Cafe. This year was extra fun because we were able to celebrate with Ben, Christy, our friend Melanie, and the Wilhoits at my parents' house. The more the merrier!

Can't you feel the love? By the way, this is the lips tie that my Dad wore the first time he met Jason and family.

Filling out our special menus. Would you like to order snugglin, huggin' or smoochin?

This year we went for a classic Italian theme.  Tortellini soup, lasagna, Italian cookies, garlic bread, kale salad, Italian sodas, roasted veggies, etc. So tasty!

Plus, we had the BEST servers. Eli, Anders and Eila did a stellar job filling all the orders.

Love you all so much! Thanks to everyone for keeping this Valentine tradition alive.

And since I love being caught up on the blog almost as much as I love Valentine's, here are the rest of our photos.

More skiing! Because let's face it--next to God and his family, skiing is Jason's greatest love.

Of course, Eli adores skiing nearly as much. This day was extra fun because Brooklyn and Talia joined us!

Four friendly Wilhoits flying on a lift.

From left to right: Jason, Brooklyn, Kara, Eli, and Ben. I love how Jason's hunched over to better fit in the line-up!

Eli, Jason and Ben braved the crowds to make it up to Brighton on the best powder day of the season. They ended up having to hike more than a mile to get parking, but they assured me it was well-worth it!

As for me, this was my golden ski day. Joy!

Of course, the blue bird day I spent skiing Snowbird by myself was pretty epic as well. Great snow and no crowds. Only thing that would have made it better would be family or a friend!

But hey, plenty of family here! Thanks for skiing with us, Wilhoits. Hanging with you is so much fun!

Of course, the only way to get great skiing is to get great snow.  We had an epic mini-blizzard where the snow fell SO hard and fast but only for a couple hours. Per Murphy's law, Annika felt sick and called for a ride home right during this interval. It took me more than an hour to make the 12 minute drive to her school. Cars were sliding off the road everywhere. I passed a couple dozen fender benders and watched three or four happen in real time. Gotta say--I've never felt so grateful for our snow tires!

Safe at home, here's Annika trudging in the door.

Gotta admit, snow looks pretty good on our home.  Too bad today was a high of 66 with even warmer weather predicted next week.

 

As sad as I am to see ski season end too soon, I can't complain too much. After all, my heart's love is hiking. Here are some favorite pictures from some of our recent adventures. Most of these were taken in the Foothills near our home.

These photos come from the Living Room hike up near the Natural History Museum. This steep jaunt is perfectly situated for a quick hike on the way home from school drop off.

Just a girl and her dog.

Except for when it's bathtime--then Zion is all Eli's. Muchisimas gracias, mi hijo! You are a gem. We love you!

San Francisco: Drive (Or Fly) Until the Map Turns Blue

Last weekend Jason and Talia flew to San Francisco where she was playing in another Ultimate Frisbee tournament. There was a little hiccup with Jason's flight (as in, I forgot to buy it), but fortunately we were able to get them both on their Breeze flight headed West.

I'd found a room through AirBnB for the two of them. While a bit quirky, the surroundings were beautiful.

That night they drove out to the Golden Gate bridge. Unfortunately they discovered that it is closed to pedestrian traffic after dark.

Still, the city skyline was stunning.

Judging from their photos, they ate some pretty fantastic food together. Gosh, I'm craving burrata!

Jason went for an 8 mile run their first morning, then came back to enjoy a "snail" pastry with Talia.

They also discovered the Rodin sculpture garden at Stanford. The last time Jason came here, he was also a BYU freshman getting ready to serve a mission. And if I remember correctly, there was some Ultimate frisbee play happening as well.

This Indian food was their tastiest meal.

That afternoon, the team gathered for their first games.

This photo is so tender. Talia's coach asked her to go be with a teammate who was upset after dropping the disc on an important play. As Jason wrote, "I love that. Talia is the best, and so empathetic, and people can see that."

I'll let Jason's journal explain the rest.

I slept well for the first part of the night last night, but my sleep was much more fitful for the last few hours. I got out of bed with my alarm at 5:45, took a shower, then woke Talia up so we could head down to Stanford for her games.

They played four games, of which they won one and were close on two others. Talia had several really great plays and I was glad to be here to watch that happen, and to cheer her on.

The best part of the day though… was this evening. After the games were complete, we walked through Stanford’s campus, then gave the Golden Gate Bridge another try—this time successfully. It was super busy, but a car was backing out right as we pulled into the parking lot. Serendipity didn’t stop there: the afternoon light was gorgeous as Talia and I walked, then jogged, across the Golden Gate Bridge and back again. There was a massive cruise ship leaving the San Francisco Bay that passed right under us as we were at the center span of the bridge. Probably something close to a thousand people were up on the lido deck, waiving at all us pedestrians above. 

And it just kept getting better.

Once back to the car, we drove across the bridge into Marin County, then headed west out onto the headlands. The entire area appears to have been set aside during World War II for military use. There was a cluster of old barracks we passed right after going through a mile-long tunnel under the hill, some of which appeared to have been converted into permanent residences. Later we drove by multiple sets of concrete pill boxes, their hulking masses hugging the earth, with wide slender window bands tucked under the concrete eaves for monitoring the entry to the bay. Circles of sawed-off bolts hinted at the old artillery equipment that surely must have been mounted there. Amazingly, the land is all open now for public use and recreation.

We drove to the top of one of the hills, then entered a one-way section of road that wrapped around the headlands. The parking lot was filled to bursting at the pass, but we found a shoulder to park on halfway down the other side and decided to get out and hike (I.e. run) back up to the top. We summited just in time to see the last of the sunlight lighting the Golden Gate Bridge, far below us but not too far distant. A million panes of glass spanning from downtown San Francisco across the bay to Concord and Oakland reflected the setting sun back at us like so many flashlights. The quick hike up left us breathless, and the panoramic views of bay and city and bridge and ocean did the same all over again.

It was getting late, and growing dark, but adventure kept calling. We stopped two more times as we continued our drive—first, for some photos from one of the pill box sites (despite the sun having dropped below the horizon, the ocean had turned a brilliant shade of purple in the light reflected by the clouds and was practically begging to be photographed); and second, to hike out to the light house at Bonito Point (?). Talia had homework that was due by midnight, but she was fully in favor of the diversions. She kept squealing in delight over the beauty of everything around us, at one point saying, “I dunno San Francisco, you’re making a pretty solid case for yourself,” and at another, “This is definitely a top three sunset, in my entire life.” Despite living more than twice as long as she has, I found myself in full agreement.

Top three. 

And while I’ve seen some other beautiful sunsets, I’m not sure that I can pinpoint any of them as well as I’ll be able to pinpoint tonight’s. Maybe it was the sunset. Maybe it was Talia’s infectious enthusiasm. Or maybe it was just getting to spend time with her, one on one, the last few bits of sun setting on her childhood, and the brightness of the future that still awaits reflected in her eyes.

 Love you Jason and Talia! So glad you could create these memories together.