One morning in December 2014, my then-four-year-old son Kierken woke with what we thought was croup. He’d had it before, so we made a doctor’s appointment where they gave him a steroid and sent us on our way.
By 4pm, Kierken was coughing really badly and crying because his head hurt. We agreed we should head back to the doctor. Kierken fell asleep so I decided to take a quick shower first. About ten minutes later, my husband started yelling that Kierken wasn’t breathing properly. He was sure his lungs had collapsed.
An ambulance rushed us to the nearest hospital where we waited for Arkansas Children’s Hospital to come collect us. Once there, Kierken was admitted directly into the Pediatric Intensive Care Unit (PICU) and intubated.
We had no idea we were about to face some of the hardest days of our lives.
We looked on in shock as they administered CPR and gave Kierken adrenalin to keep his heart beating
The next day, we thought the little guy was doing good. We still believed he just had an especially bad case of croup and that we might be there for a week or so. Then, that evening, they found Kierken’s white blood cell count was really low. He was fighting a stronger infection than we’d thought.
Around 8pm that evening, his blood pressure dropped. We had to sit there and watch them try everything they could to bring it back up – and then he coded. Twice. We looked on in shock as they administered CPR and gave Kierken adrenalin every two minutes to keep his heart beating.
I honestly can’t say how long this went on for. I just remember it felt like forever. Kierken was hooked up to an ECMO – essentially a heart/lung bypass machine. My baby boy was so bruised and swollen, and his heart didn’t beat for the next four days. But, thanks to the ECMO, he was stable.
There was just a 5% chance he’d make it through the operation. But without it, he wouldn’t survive three hours
On the Saturday morning, we were told Kierken had group A streptococcus. It was in his bloodstream. He was very sick, and his chances of survival were low. As the day went on, he got worse and the ECMO wasn’t giving him the support he needed.
The doctor told us they needed to open him up and connect the machine directly to Kierken’s heart. It was risky – just a 5% chance he’d make it through the operation. But without it, he wouldn’t survive the next three hours. We had no choice.
Amazingly, thanks to the wonderful team working on Kierken and the grace of God, the surgery was a success. We learned afterwards that they had never done this on someone with this infection before. Kierken was the first.
My son stayed on the ECMO for 74 days. His chest was open most of that time
My son stayed on the ECMO for 74 days. His chest was open most of that time. There were complications and two more infections for his little body to fight during his PICU stay. There were many times when they tried to take him off ECMO, but he was unable to regulate his CO₂ levels independently.
His artery that the ECMO was connected to got very weak after being attached for so long. As a result, his chest filled up with blood and had to be cleaned out several times. Kierken had to come off the ECMO, and it had to be soon.
After a lot of research and discussion, the doctors, surgeons and the ECMO team came up with a plan. They’d take the machine off and use grafts to connect just the membrane that helped control Kierken’s CO₂ levels to an artery in his inner thigh.
The doctors had no idea what kind of damage there would be as a result of all he’d been through
This meant his heart would be the pump instead of the ECMO – a bit like an artificial lung. And they would then be able to finally close his chest.
Two weeks later, Kierken was able to control his own CO₂ levels. They removed the membrane and it was a success. Thank God! But we weren’t out of the woods yet. He was still intubated and we needed to start waking him up. Kierken had been sedated and on very high doses of pain medication for a long time. The doctors had no idea what kind of damage there would be as a result of all he’d been through.
There was talk about him needing a tracheostomy because of the trauma to his lungs. On Easter Sunday, April 5 2015, they extubated Kierken to see if he could manage without one. While he could oxygenate himself, it wore him out to do so. His lungs were still so weak.
After almost a month on high-flow oxygen, it was agreed a trach was needed. This meant he could go on a ventilator to help recondition his lungs. At the end of April, Kierken got a track and a Mickey button (a feeding tube).
Kierken had to learn to sit up, stand, walk, eat and drink all over again
It was the best decision we could have made for him. Just a week or so later, we could see he had more energy. He was awake more. After a couple more weeks on the PICU, we moved to rehab. As well as being weaned off all his medication, Kierken had to learn to sit up, stand, walk, eat and drink all over again.
We finally got to take him home on July 28, 2015 – seven and a half months after he was first admitted.
I’m delighted to report that Kierken has had a beyond-amazing recovery. His body has healed. He’s off the ventilator. He only needs one medication. The Mickey button was removed last August and the trach in the September. His heart, kidneys, liver and lungs are all functioning normally again. We feel so thankful every single day.
Kierken has been through so much. He’ll deal with the aftermath for the rest of his life
Yes, Kierken has some battle scars. The biggest casualty is his voice – his vocal chords grew together while he was in hospital, and he could only talk in a whisper. He had surgery in June to cut them apart – while he’s found his voice again, he still struggles to use it after almost four years. He’s having to retrain himself, but we’re sure it will come in time.
Kierken has been through so much, and we know he’s likely to deal with the aftermath for the rest of his life. His immune system is weak and he has chronic lung disease. That is getting better with time and will hopefully continue to do so.
Make yourself aware of the symptoms and signs of strep and sepsis. Push for tests. We were extremely lucky; not everyone is
I wanted to share Kierken’s story to make more parents aware of the dangers of streptococcus and sepsis. Strep is such a common illness, I don’t think people realize the risks it brings and just how deadly it can be. Sepsis isn’t talked about enough for people to realize how quickly it can happen, or how often it does. It’s scary. Please, make yourself aware of the symptoms and signs of both. Push for tests in hospital. Make sure the doctors do a full examination and don’t miss anything.
We were extremely lucky, but not everyone is. I share Kierken’s story also because, most importantly, it’s one of faith and hope. That he is still here is a miracle, 100%. When a community comes together in prayer, it can move mountains. We feel truly blessed.