We met this morning with Namine’s new heart doctor.
Namine has gone through more cardiologists than any other type of doctor, I think. She’s on her third now, just because the last one transferred out of Children’s Hospital of Wisconsin to somewhere else, I don’t remember where. (The one before moved to Chicago.)
Dr. Block — not to be confused with Dr. Black, Namine’s orthopedist and bone specialist — has met Namine a few times in the past, but didn’t really know much about her.
Namine is well-known in the cardiology department due to having a rare heart condition; that combined with her unique name makes her especially identifiable, but there is a world of difference between knowing of her and knowing her. Dr. Block wanted to assure us that he recognized that as her parents, we know her better than he does, and that he wants to get to know her better over the coming years.
I’m getting ahead of myself, though. Before our appointment with Dr. Block, Namine needed an echocardiogram. When I asked her if she remembered what that was, she said no. But then Jessica described it to her, and she said “Ohhhhhh that. Yes, I remember.”
Then, when we got up to the clinic, we found out that they also wanted to do an EKG. That never takes too long, but Namine is allergic to adhesives, so I’m sure she’ll have a number of rashes to deal with for the next couple days.
After the EKG was done with, Dr. Block came in. He introduced himself to Namine, and said she could call him “Dr. Joe” if it was easier to keep his name apart from Dr. Black’s. Namine said, “No, Dr. Block is fine.”
After all the typical things — measuring her blood oxygen level, listening to her heart and lungs — Dr. Block told us that her heart sounded good. She was fit as she’d ever be for her Make A Wish trip in September. Namine’s previous cardiologist had already signed off on that one, but it’s good that we have her current doctor on board as well.
Even with as healthy as Namine’s heart is, there is still the ever-present question of a heart transplant. Will Namine need one?
The short answer is “yes.” The more important question is: when will she need one? The answer to that requires knowledge of the future, which unfortunately (or fortunately, depending on your point of view) no one can provide.
In the meantime, it’s all we can do to monitor her heart. To that end, we were given a Holter monitor. We’re to put it on her for 24 hours, let it record her heart, and send it back to the hospital. We’re planning on putting it on her Thursday, since that’s a particularly busy day. We’ve got physical and occupational therapy that day, and then Namine’s rescheduled hand crank bike class in the evening.
The Holter is one more thing toward keeping an eye on Namine’s heart health. She’ll also continue to have bi-annual checkups with her cardiologist; he’ll continue to keep an eye on her numbers, and we’ll all remain vigilant to Namine’s evolving health.
When I say “evolving health,” that swings both ways: improving and declining. For now, at least, Namine is healthier than she’s ever been. Overall, we visit the hospital much less than we used to, and each stay has a shorter duration.
Namine has no surgeries scheduled for this summer — and summer is when you schedule surgery, due to the decreased risk of infection (it’s much, much, higher in the winter).
For all this good news, though, it never hurts to remain alert and prepared. When Namine’s health declines — when the time does come when she will need a transplant — it will likely be fast. And we will need to be ready.
This post is part of the timeline: Heart Repair – an ongoing story on this site. View the timeline for more context on this post.