Hello friends! Happy Leap Year. How's everyone enjoying their extra-long February? It's the month of love and hearts. There have been many years when I would have welcomed an extra day in February to pull off Christy's epic Run Swim Bike Cook, but this year I didn't even try. Let's be honest: I'm tired. This final push to the end of nursing school feels a bit grueling. I just have to keep reminding myself that I'm nearly there!
Much is on my mind today. My heart is with my Grandpa John Wells who is rapidly declining in Florida, as well as with his wife Elaine, my Mom, and my Aunt Alison. It doesn't matter when it happens--it's really hard to say goodbye. Grandpa Grandpa, we love you! We are sending all our love and every prayer.
My thoughts are also with Annika, who is home sick with a stomach bug today. In my last post, I was pretty open and honest about our feelings surrounding heart transplant. Well, the conversation wasn't quite that easy to dismiss. At the end of January, her cardiology team reached out to our family with a strong recommendation that Jason and I participate in transplant "boot camp." After careful review of Annika's case, the general consensus was that we needed to give serious consideration to listing her sooner rather than later. "Boot camp" turned out to be a seven hour transplant evaluation where we met with a nurse, cardiologist, social worker, dietitian, pharmacist, financial coordinator, and cardiothoracic surgeon. Needless to say, the day was a lot, especially the candor of the surgeon.
As difficult as it was, Jason and I left boot camp feeling better informed. We came a long way in understanding the viewpoint of her cardiologists and why they see her as such a strong candidate for transplant. They believe, and probably rightly so, that she would feel lots better with a transplanted heart. To them, transplant seems kind of inevitable, so they would like to get her on the list while she is still strong and healthy. For Jason and I, the necessity seems less clear as we interact daily with a child who usually seems fine. We felt respected and heard as we expressed our own concerns about the risks and outcomes of transplant.
Needless to say, the decision about whether/when to list Annika for transplant is huge. It's extra challenging because in many ways, the decision feels like it shouldn't even be ours. At the end of the day, it's her body, her life. Yet at this point, we as parents ultimately have to make the call and pray that we do the best we can for our little girl. Needless to say, it's something that we think and pray about constantly.
Yesterday the team contacted us with the formal results of the evaluation. As expected, they recommended we list Annika for transplant. Ultimately, we've decided to hold firm to our original decision to not list her...yet. Still, we don't want to be foolish and turn a blind eye to signs and symptoms that indicate a marked downturn in quality of life. We've made a concrete list of parameters that would indicate that it's time to re-evaluate and potentially list.
Our list of indications that it's probably time to get on the transplant list (1-2 years wait time):
- Can't walk to school (0.4 miles, mostly flat)
- More than 2 shocks in a year (we originally set this number to 3, but given her higher beta-blocker dosage, Dr. Lal thought this threshold was probably too high.)
- Shortness of breath climbing the stairs in our home
- Regular nausea/vomiting, weight loss, or loss of appetite
- Experiences chest pain without exertion
- Experiences chest pain with exertion that doesn't resolve quickly
- Feels substantial social isolation from peers related to inability to participate in activities
- Significant deterioration in cath lab measurements, particularly related to pulmonary perfusion (Dr. Lal said some level of decline should be anticipated, so we probably shouldn't let the numbers drive the decision unless they are terrible.)
Writing this list feels surreal, almost like an assignment for nursing school. I am so grateful that nursing school has given me the ability to "talk the talk" and better understand the pathology of what is happening with Annika. I would say that cardiac function, heart failure, and transplant come up as major topics in at least 80% of my classes. This base level of understanding has been so empowering in helping us engage in the decision-making process instead of relying solely on her medical team.
Making this list has also provided a great amount of peace because it no longer feels like we need to revisit this decision every day. While we are still open to all conversations with her doctors, as long as we haven't met any of these parameters, we feel comfortable stating: "it's not time."
But hey, it IS time for living each day to the fullest and sharing as much love as we can. Tonight I am flying to San Francisco with Brooklyn to watch her play in an Ultimate Frisbee tournament on Saturday. I am so excited! I cherish these moments with all of my babies.
