A portrait of my daughters every week in 2017
This weeks photos are a little different. We spent the last few days at the Mayo Clinic, in Rochester MN. I’ve known for a while that at some point, we would ask for a second opinion from their team. This spring I decided that some point, was now. After her annual appointment, and subsequent holter study, some thing’s changed and medications were added and everything just felt very uncertain for us.
The thing is, Ebstein’s anomaly is so incredibly rare that even some of the best cardiologists don’t have the experience to truly deal with it. It’s complicated and each and every case is different. I’ve read all of the studies and papers. I’ve downloaded videos and presentations. I’ve viewed webinars and talked to as many parents and people living with Ebstein’s as I can. I know what the evidence suggests. The surgery our home team was recommending isn’t the right course for this condition. I mean I get it, in a way it makes sense. If her low oxygen saturation is the obvious issue, you close the ASD (atrial septal defect) and boom, no more low sats. But here’s the thing. Ebstein’s is vastly more complex than just low oxygen saturations. When she turns blue, she’s actually using that hole in her heart. It’s serving a purpose. You close that hole and yes, you fix the cyanosis, likely exercise tolerance increases, but all of that pressure and strain remains, because the heart is still greatly malformed. And that pressure and strain increases over time without that hole to relieve some of that stress. So I made the call. It took some time to get our records there, and then it took a while to hear back. When we finally did they requested we travel there, for diagnostics, testing and consults.
This week came and the appointments were finally here. We went up the day before and settled in to the hotel. Our girl was ecstatic to swim in the hotel pool, and knowing she wouldn’t be able to the next day due to a holter monitor being placed, we had to give her as much time as possible. We packed a lot into that first day in order to make sure she (and we) had some fun. The next morning we were up early and headed down to the main campus to start our day.
Mayo is huge. Obviously. I knew that. I didn’t quite realize how massive until we parked on the 10th floor of the parking garage and were still staring up at one of the main buildings. Our first appointment was on the 16th floor. Walking in that first morning, I felt completely overwhelmed. By the size, the people, the space. As our day progressed and I got comfortable navigating, I started feeling something else. Humbled. Greatly and incredibly humbled. Everyone who is in those buildings, those patients, they’re all there because they have serious health issues. Thousands of them. The number of hotels and restaurants might lead you to believe you’re in a tourist town, but you’re not. They’re all there for that hospital. For those clinics. Rochester has a population around 114,000 people. Mayo employees approximately 34,000 of them. That’s 30% of the city’s population.
It was an immense feeling, when it swept over me, especially when we saw other kids. Kids who were obviously “sicker” than my daughter. We got through our appointments relatively unscathed, which is saying a lot considering we had a 4 year old who needed blood work and an X-ray which she was terrified of, and a two hour long echocardiogram. We also had the 11 month old with, whose nickname is wild baby. Honestly the kids faired far better than my husband and I. I was pretty proud of how well they did.
The next day was all consults, the last of which would be a surgical consult where we would get some definitive answers on when. When would she need surgery? What type? Waiting for the surgeon was stressful in itself. We were taken to a surgical waiting room, where families awaited news on their loved ones. The room was small and crowded. And we arrived with a stroller, a 4 year old and a really loud and tired baby. Luckily I got the baby to sleep relatively quickly, but then we just kept waiting. Two hours passed. When we finally had our consult, in the smallest prep room I’ve ever been in, the baby was awake again and the 4 year old was pretty over it all. But we managed to keep them entertained (iPad for for the 4 year old, wallet for the baby) and got through the consult. His recommendation was that she would need the surgery, and not the easier procedure recommended by our home team, in the next few years. He suggested she could potentially be part of a program using her own stem cells in the process.
Overall the visit went much better than I anticipated, but the baby shrieked much more than I hoped (apparently eating in a restaurant now equals screaming time to her). We found some lovely restaurants, thanks to the recommendations from friends, found “the best toy store in the world”, according to the 4 year old and actually managed to get in some quality family time, something we rarely get with our opposite schedules. I’m sort of enamored with the whole medical system up there, it seems to work so flawlessly, and the knowledge and expertise is simply unmatched. Working in health care myself, I tend to be hypercritical anytime we visit a provider or hospital. In a really strange way, I’m almost looking forward to our next trip.