It has been a month since I last wrote something about Archers heart journey. He had been tested (wrongly) for C diff. -kids under 1 automatically have some level in their system due to an underdeveloped gut microbiome- and ended up on precautions that they lifted after 4 weeks (which was preferable to the indefinite period that infection prevention typically does- thanks to our wonderful heart failure team for fighting for our little guy!). We had a good solid week where he went to therapies and walks and Archer was just thriving.
March 6, at 8:30 at night, I had gotten back from the hospital and was getting ready to wind down for the night, when I got a phone call. Thinking it was just a routine update I answered- hearing one of the cardiologists on the other end. “We’ve received a heart offer for Archer” she said. Almost immediately, I felt intense hope swell in my chest, followed by a cloud of disappointment- Archer had received the Varicella and MMR vaccines two weeks prior, as we were fairly certain it was still too early for him to receive any heart offer… and they typically don’t transplant until 4 weeks post vaccination. (Varicella and MMR have live strands of the virus, and absolutely CANNOT be given post-transplant…) I tearfully reminded the cardiologist of this, and she apologized for forgetting that minor, but significant detail. She told me she would get ahold of the infectious disease team and they would discuss and weigh options.
The phone hung up. I was broken. The miracle that we had been tirelessly praying for was just within reach but felt like it was just ripped away. When I received a call back from the cardiologist, she told me they would keep Archer off of feeds for now, but would have to bring this up and deliberate among the team and weigh options the next day. I informed family and it was a tearful night, and we did not get much rest (understandably).
Additionally, feelings of grief for the family that lost their little one came in a flood of emotion. A heart donor match, though joyous for us, comes with a heavy price. I had been through many of those emotions 3 months prior when we first found out about Archer’s diagnosis, and at many points along the way. Those feelings of grief, knowing that losing him was a possible risk with his low heart function, the VAD surgery, every time there was buildup of fibrin and clotting on his VAD putting him at risk for stroke… it was all too much at points and there were many tears shed as we navigated the unknown. My heart goes out to that family, and I don’t have the words enough to express comfort, grief, gratitude… or a plethora of emotions that we experienced that night.
The next morning I woke up and went to the hospital like normal, the slightest bit of hope in my heart that I dared, so as not to be disappointed if the answer was no. If this was not our miracle, it would be someone else’s and that was my one consolation through the day. Hour by hour passed with no news, and my hope dimmed. They were doing tests and discussing among the heart failure team and I knew they wanted what was best for Archer and wanted the best compatibility, but having no answers was tearing me up.
Eventually, by mid afternoon, one of the heart surgeons, the same one who had performed Archer’s VAD procedure, came by the room. I braced myself for the news, anticipating disappointment- when he said that they decided they could go ahead with the transplant that night. A rush of emotion and complete disbelief overcame me. I called Kory and told him to drive up to the hospital right away. The next few hours were a whirlwind as I was informed of the various risks that come with heart surgery, ones we had been told of multiple times before… and it is really much of a fog in my memory.
Archer stayed off feeds for the rest of the day (which he was not happy about) and we mostly cuddled and napped. They started getting him ready for the procedure at about 10 that night, and despite being exhausted and hungry, he gave me some beautiful smiles and even some laughs as we waited to go to the OR. When it was time to go, we walked him down to the OR and said our goodnights, and then they took him back. Nothing prepares you to see your child wheeled back for intensive surgery. We headed back to our room for the night, and eventually fell asleep out of pure exhaustion.
The following morning they called us and let us know the surgery went well and he was back in the Cardiac ICU. We were, again, overcome with joy that the operation had been successful and our little boy had a brand new, fully functional heart.
We aren’t out of the woods yet, and Archer still has a large amount of recovery and additional monitoring as he waits to get the intubation tube out, his anti-rejection meds balanced, and the heart function monitored as it has a lot of recovery to make as well.