I’ve been getting a lot of messages asking how Katja is doing, what went wrong and general curiosity. We appreciate everyone’s concerns for her. I wish we had answers. I’ve waited days to post this because there isn’t much to answer.

This is the reality of doing something only 40ish kids in the world have had done. Answers are scarce. What we know is this…

Thursday was going as planned. The team was giving us all our discharge instructions for Friday. She was set to take her last IV dose of steroids Friday morning and switch to oral to continue her weaning off them back at the hotel. That evening right around dinner her monitor started to alarm. We all assumed her stickers were acting up but it happened again and again. At this point we decided to get up and check on her monitor. Jori and I had been sitting in the far corner of her room and Katja was in bed.

Both of her nurses had now entered and we all started watching her heart rate. Randomly after 3 mins it stopped for a few seconds and came back. To confirm, her nurse listened with a stethoscope during the next episode. She immediately left the room. I placed my hand on Katja’s chest during the next one and felt it. Her heart beat, stopped, jiggled a little and started again. My own heart absolutely sank.

At this point the floor Attending entered the room and a lot more people. She continued to do this every 1.5-3 mins for about 4-6 beats. Her heart rate dropped from 80-90 bpm to 40-50. She didn’t feel a thing. Even when we asked, she said she felt fine. She happily played on her tablet the whole time. An EKG was preformed and they caught it. A complete Heart Block.

We had visitors arrive and I sent Jori to the waiting room with them. I knew what was potentially coming and he has enough PTSD from medical procedures with her.

She was rushed back to the CICU. Her room lined with crash carts, echos, EKGs, Epi and all the serious stuff you never want to see.

An echo was preformed and it showed absolutely nothing. Everything looked fine. I was pulled to the side by the team and asked to sign consents for emergency services. Pace wire placement through her neck (emergency paddles were already on her), central line sign off, emergency surgery consents. Her surgeon came. Lots of discussions were had. 30+ people were in and around her room.

We were incredibly lucky that the Cardiologist on call specialized in rhythm and electrical signal disorders. He recommended she start isoproterenol immediately to see if it stopped. I am so thankful he was there. The isoproterenol shot her HR to the 180s but the Heart Blocks stopped immediately. This isn’t a medication or an issue you usually see in young children. I will forever be grateful he was there that night because the alternatives were really scary.

Once it stopped, they slowly weaned her down to keep her HR in the 140-150 range. I had Jori come back to the room and we discussed causes with the team but no one had answers. She remained on the isoproterenol overnight.

In the morning she was still not allowed to eat and getting pretty aggravated because she “felt fine”. She was sent down for a chest MRI that was sedated under general anesthesia so good imaging could be preformed.

When she returned, she demanded fried chicken as soon as her eyes opened 😆 So we ordered her some and she was much happier now that she could eat (a full 26hrs since her last meal).

The isoproterenol was stopped. As of writing this the Heart Block has not returned. We have no idea what caused it. She has a small hematoma near her Aortic valve (where it was stitched on) but nothing that would cause this. He floated ideas about her low magnesium levels and clonidine making the perfect storm, damage to the vagel nerve, medication interactions and pretty much anything they could think of.

But we have no explanation so far. As long as it doesn’t return she’ll be able to return to step down on Monday. Whenever they discharge her, she’ll be returning with a monitor for at least a month.

This is the reality of a child with CHD. Every surgery brings new challenges and complications. It’s why we picked PHT, to end the surgery cycle… hopefully.

For now our new “normal” is 26 medications, an immune compromised child, no more grapefruit/pomegranate/NSAIDs, no sushi and a potential electrical heart rhythm issue.

We’d still do it all over again if it means this is her last.