The day after finding out that Leo needed a heart transplant was long. Long because I knew my child’s heart was barely functioning on its own. It was some consolation knowing that he had been living this way at home for weeks, so we all held out hope that Leo could hold on for 72 more hours until the VAD surgery.
Leo’s IV went bad from the emergency room and he needed another one to get important intravenous medications. It is also a safety net in case of a sudden cardiac event. Two nurses came in to place his new IV. Like any infant getting a needle poke, Leo cried. A loud alarm sounded and his heart rate was dangerously low. We learned that over the next 2.5 days, Leo needed to remain calm for his heart to make it. His heart was unable to handle the additional stress of crying. It was an alarming event, but the CICU senior fellow rushed into check him out and he appeared to have recovered well. The rest of the day was spent waiting.
The following morning, Sunday, March 31st, I arrived at the CICU with Derek (Leo’s twin) and my mom while we waited for Leo’s dad to arrive later that morning. As the morning went on, I showed Leo his favorite books and toys, but he appeared disinterested. This was unusual for him to ignore his favorite book about a bee.
In all of the CICU pictures, you will see stickers on Leo’s forehead. These are NIRS, which essentially give an indication of blood flow to the brain and kidneys on a scale of 0-100. They are typically looked at over time (i.e., one drop during a crying spell isn’t a big deal, but if they continue to go down and stay down, something needs to be checked out). Above 90 is ideal for a healthy person. It may be lower when dealing with a sick heart, so the trend is important. That morning the NIRS were in the 40s. A little low, but his vitals were good otherwise. A few minutes later, they dropped a little more to the 30s. NIRS can be finnicky, so they changed his stickers. Back into the low 40s. Better. Wait, now theyre in the 30s. And now the teens. Something was very wrong and my mom went to get the nurse while I stayed in the room.
The team was doing rounds a couple of rooms down so a nurse practitioner came into look at Leo. He was lying in his crib while she was examining him and suddenly I heard the code alarm. “Oh no,” I thought. “Someone’s poor baby must be coding.” I looked up and saw a large group of people running towards our room. Leo was the baby who was coding.
His heart rate came back up and everything seemed stable again. It was a scary event, and the charge nurse sat with me and gave me a hug while I contined to sob. I sat there terrified at the thought of doing this for another two days. I don’t remember what happened in the following minutes, but not very much time had passed since the attending doctor had left. The NP must have stayed back to keep an eye on him because next thing I knew, she was holding Leo and then turned around and hit the code button once again.
For the next 45 minutes, Leo received CPR. I was escorted into the hallway and a barrier was put around the room. I couldn’t see what was going on. All I could do was sit there and envision a positive outcome. I listened to the reassuring sound of the constant heart rate beeping, indicating that the CPR was producing a good pulse. The on-call surgeon arrived and several minutes later, the energy of the unit shifted and I sensed that something had improved. A fellow came over to explain that Leo was now stable and on ECMO, a machine that was taking over all of the work for his heart and lungs.
An echo tech arrived to confirm placement of the cannulas in his heart when the scan was abruptly stopped. Leo’s mitral valve was so stenotic that even ECMO wasn’t helping his left atrium to decompress. He was taken emergently to the cath lab where the skilled cath doctor was able to create a bigger space for blood to flow into his left ventricle. The procedure was successful and we were able to spend the evening in Leo’s room once they stabilized him and got him settled in. That night I felt a sense of peace. It was not a day where everything went wrong. Leo had a cardiac arrest, but it happened in the CICU where he had access to the care he needed. It was a day of miracles where everything was falling into place. I just wasn’t sure how yet.
Please look out for Part 3 of this blog, where Leo will be placed on the VAD. Please share this page with friends and consider donating to COTA on behalf of Leo!