In my book I wrote about how I’ve not had a bad day since April 16, 2006 – when a very wise woman explained that any day we’re alive to feel, even if it’s pain, is not a bad day. So today was a long, difficult and exhausting day, but it was not a bad day.
Liam and I left for the hospital at 11:30, passed SEVERAL car accidents on the highway, and yet still made it to the hospital on time. I had a brief meeting with the new head of surgery to discuss some advocacy things, and then Liam had his appointment.
The nurse who weighed him in was his Fontan Nurse who remembered significant details nearly 6 years after the fact. Then we had a very long echo where we saw some very clear pictures of his Fontan conduit. However his pulmonary branch arteries are ever so and still too small. His sats were 85, but for a family who lived in the 60s for a long time with oxygen, we take 85.
After the EKG we waited a very long time because the doctor was with another patient. Then came the news we’ve all been waiting for. . .sort of.
Liam is presently in pacemaker purgatory. We are living with a special monitor and until he has another “event” at which point the doctor will assess that event and schedule “corrective measures,” based on the details of the incident. He said it may be this summer, it may be next summer, we may have the monitor for a year, we may have an event tomorrow. . . unless Liam faints, then it’s straight to the hospital. So we are in a holding pattern of “wait and see.” If this happens then that happens.
Liam also (after I promised him there would be no pokes at this appointment . . . sigh) had blood work drawn. He did good so he got to stay up late tonight. However, there’s a very small chance we’ll be in the cath lab this summer too if the blood work comes back funny, but that is less likely than the pacemaker.
So, maybe Liam will have one surgery, two surgeries, or no surgeries this year. I cannot tell you unless and until his blood work comes back and his heart decides to speed up for no known reason, we catch it on the monitor, and then we know the reason. I feel like I spent eight hours away from home to really learn nothing at all, but it’s still not a bad day.
The drive home in a snowy Denver rush hour was precarious and took almost two hours instead of one, but again not a bad day. In fact, when Liam told me in the car, “It was nice to have a Mommy-Liam only day,” despite the broken promise of poking and the looong delays, I thought, “This was a pretty good day.” And it was.