Callaway’s Story

Site created on June 21, 2020

Welcome to our CaringBridge website. We are Luke and Carina Farkas. We are using this page to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Our daughter, Callaway True Farkas, was born on Thursday, June 18th, at 11:53am at the Baby+Co birthing center,  happy and healthy. We enjoyed our life as a little family of three for one and a half days at home. But we noticed on Saturday afternoon that Callaway was getting strangely lethargic and breathing heavily. We took her to the Vandy after-hours clinic and they called an ambulance within seconds of seeing her. She had become visibly more pale and limp on the way to the clinic. 

We were ushered to the ER, where a team of doctors and nurses acted quickly and kindly to address all of the possible infections that may lead to these symptoms. By the time she reached the ER, Callaway presented with a dangerously low body temperature, severe lethargy, and strained breathing. The team worked fast to make sure to keep her warm while they supplemented oxygen and started antibiotics, labs, imaging — the whole nine. The goal at this point was to make sure they were treating against the big infections associated with these symptoms: sepsis, meningitis, and UTI. 

Over the course of the time in the ER, the team decided she needed to be admitted to the Pediatric Intensive Care Unit (PICU), and they had surfaced the possibility that what she has going on may be genetic. Sure enough, within hours of being admitted to the PICU, her doctor identified the hugely excessive levels of ammonia in her blood, and said, "We now have a cause... for everything." That night, Callaway underwent a procedure to insert a catheter that would allow them to treat her ammonia levels effectively. But her initial treatments didn't do the trick, and her already through-the-roof ammonia levels increased. On Sunday, the team decided we needed to pursue dialysis — not for her kidneys, but to actively filter out the ammonia from her bloodstream. This took some time to get going, because we needed additional blood, and some of the fluids she needed before dialysis started were delayed. But in the late afternoon, it got started. 

On Sunday night, her health began to deteriorate in other ways — she developed a blood clot in one of her legs and had to be put on blood thinners. By Monday morning, she began to have rhythmic jerking and the oxygen saturation levels in her blood dropped very low, requiring her to be intubated. Even the intubation wasn't working properly and they had to manually breath for her multiple times over the course of hours. They finally got her stable enough to take her downstairs for a head CT. The results of the head CT revealed global brain swelling, due to the extremely high levels of ammonia in her blood. This was the worst news we had heard so far, as we were told that this would likely affect her ability to normally function (like being able to walk, talk, etc) if she pulled through. Her heart was also being compromised by the levels, with half of it severely weakened. This was the cause of her not being able to regulate her oxygen saturation levels. 

We then had a long conversation with the lead geneticist on her case, who explained that Calla's condition affects 1 in 50,000 or 1 in 100,000 people. He has narrowed it down to one of two conditions: Propionic Acidemia or Methylmalonic Acidemia. These are not tested for during pregnancy (Carina underwent typical genetic screening early in her pregnancy and was determined low-risk) so the only way to know if this is going to be a risk factor is after birth, when newborns have their 24 hour newborn screen. Calla of course had this screening at her 1-day old doctor's appointment. So even if we hadn't noticed Calla's deteriorating health, we would have received an urgent call from the Tennessee Department of Health once her screening results were read, telling us to immediately head to the hospital. 

The geneticist told us that if he had reason to be optimistic about Calla's future, he would give it to us. He said he had never seen levels this high this quickly, and so immediately after being born. While some children do survive, their complications can be very severe and require much medical attention. 

We spent the rest of Monday in shock, trying to process all we had been told and figure out what next steps were. We were told that once her ammonia levels got into the normal range we would try to take her off of sedation and see if she exhibited any normal baby functioning (moving her arms, looking at people, etc). From there, we would just spend the next few days evaluating the damage done to her body and her chances of survival. 

It's Tuesday morning now as I write this, and her ammonia levels are within the normal range finally. The next few days will hold a lot, and we are eager and terrified to proceed. We have each other, and that has been the greatest comfort throughout this absolute nightmare. We love our little girl so much, and it has been so painful to watch her go through all of this. She is beautiful and sweet and we ache to hear her little baby sounds that we had already gotten used to during our little time spent together at home. 

Thank you for reading this, and for all the texts and calls and prayers and love you've given to our little family. We are hanging in there and need every ounce of prayers, good energy, and positive thoughts you can send our way. 

Newest Update

Journal entry by Carina Farkas

"I wish I had a blog," I just thought, feeling the urge to type out some big feelings and wonderings, and wanting to click "publish" at the end of it. I journaled almost every day in January, wanting to force some reflection (how's that for an Enneagram 1 phrase?), wanting to retrain myself in slowing down my thinking. It was great. I'm glad I did it. 

And then kind of hilariously, on February 1, after my goal of reflecting on each day was complete, Callaway got sick. We spent two days trying to manage it at home, and ultimately had to go to the ER on Friday night. Now it's Sunday, we're home, and I'm wondering at the coincidence that my mandatory reflection period didn't including a hospital stay, which always brings up a lot. 

So. I remembered we have a CaringBridge, and here I am. REFLECTING. 

Since her June 2021 transplant, Callaway has been hospitalized a handful of times. Twice in late 2021, twice in 2023, and now this last Feb 2-3 stay. These have been relatively minor stays, you guys. One was to observe her after a biopsy; one was to observe her during a common cold; one was for a stomach bug; the next for RSV; and this last one for another stomach bug. 

We are learning that Callaway's body gets upset pretty quickly once she's intaking less hydration due to illness. We take her in for labs, which reveal unhappy kidneys and low sodium levels. Once this begins, it's pretty hard for us to right the ship at home. This time, she couldn't tolerate all the pedialyte we were g-tubing into her belly, and when it all came back up, the liver team said we needed to come in. I think typical kiddos can often get a bolus of IV fluid in the ER and then go home, but that's not really an option for Calla. I think because they want to monitor her electrolytes closely AND we know that prolonged stomach issues causes her anti-rejection med, Tacrolimus, to increase in her body. The fancy term for this is "supratherapeutic," where the levels in her body become higher than what is necessary for the job the med is trying to do. This can turn into toxicity, which causes tremors, acute renal failure, neurological damage, etc. 

As I'm writing this, I'm getting closer to the heart of one of my BIG FEELINGS right now:

Tacro. Tacrolimus. This medicine that we give Callaway every 12 hours keeps her liver happy in her body. It blunts part of the immune system, almost blinding it so that it can't "see" the foreign organ in her body (yup -- it's still foreign, even though it's been in her body for longer than her native liver). This allows her to.... uhm... stay alive. It's the most incredible 1.6 mls of liquid I could ever syringe into her mouth at 8am and 8pm each day. 

AND. 

Tacro is responsible for basically all the health complications we are constantly monitoring.
Calla's eosinophils (a type of white blood cell) are way too high, thanks to Tacro. 
Calla's in mild kidney failure, thanks to Tacro (and methylmalonic acid, to be fair to Tacro).
Calla needs to be admitted to the hospital for some respiratory and gastro viruses, thanks to Tacro. 

If you have never gone through a serious illness with your child, you might have the question, maybe even the tiiiiiiiniest bit of judgment, like.... how can you complain about this medicine? Your daughter literally wouldn't be here without it. Everything from here on out is just icing on the cake.

I know. Trust me, I know. You can't gasp at the audacity of any of my thoughts that I haven't already nailed myself to a cross for. Callaway has been hospitalized 5 times for less than 10 nights total since transplant (if you know her journey, you know this is jaw-dropping in the best of ways). This girl LIVES. She THRIVES. She has gotten to take part in so much of what the world has to offer a 3-year-old and she does it all beaming and singing and RUNNING and tantrum-ing and it's just beautiful beautiful beautiful. And it is still absolutely exhausting. And I still find myself a mere human, wishing it could be better; wishing I didn't have to count protein; wishing I'd never have to put her under anesthesia again; wishing I could send her to the forest school with the disgusting "nature potty" and not think twice about it; wishing someone didn't poke a needle into her arm three times before sundown on Friday; wishing wishing wishing for a world free of pain. 

I lamented into my mom's hug yesterday, "I just want to be better at this. I want to be better than I am. I want to be less anxious by now. I want to accept that this is my lot in life, and hers, and just be. right. where. I. am." And I can be, and I will again, and also some of that acceptance includes getting myself down from the cross. Each time. I love tacro. I fuckin hate tacro. I love my life exactly how it is. I desperately want it to be easier. I believe suffering helps reveal the light. But don't give me this type of suffering to reveal that light. 

I am a body and mind of contradictions. Welcome to the planet, Carina. Make yourself at home. Turns out there's room for all of it. 

I've been exploring Pema Chödrön's teachings around hopelessness. I was really hoping Calla wouldn't have to be hospitalized. But she DID have to be, because it was the safest, best decision for her. So the hope actually caused me some suffering, because I was wanting control over something I didn't ultimately have control over: whether or not her body needed more support than I could give at home.

If I have hope, I also have fear. "As long as there's one, there's always the other. In this world of hope and fear, we always have to change the channel, change the temperature, change the music, because something is getting uneasy, something is getting restless, something is beginning to hurt, and we keep looking for alternatives." She says that "if we're willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation.... Giving up hope is encouragement to stick with yourself, to make friends with yourself, to not run away from yourself, to return to the bare bones, no matter what's going on." 

I get it. We're human beings. Hope is important. It can be a catalyst to find help, to stay on the planet another day, to create change. But it also can add suffering on top of the pain, and so I'm going to keep trying to abandon hope, and be with what is, including my grief of a 24 hour hospital stay. 

How's that for an update? 

Love,

Carina

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