The things we didn't know

At today's echo. He was a
champ about it!

We've been home for close to six weeks now. Six weeks filled with doctor's appointments, echos, x-rays, follow-ups...honestly, I've been more in touch with Western medicine in this time frame than the rest of my life combined. There are a lot of cogs that have to mesh together to keep Brandt healthy, and it takes a lot of juggling on our part to help them make it work!

Today, we had an appointment with Dr. Ruggerie. He's the original doctor that explained Brandt's diagnosis to us the day he was born, and he'll be the heart doctor we go to until either he retires or we move across the country (the latter being so unlikely that it's laughable). It was a regular monthly check-up with an echo, scheduled to last an hour. We ended up getting out of there three hours later, partially because such is the way with medical offices, and partially because I apparently never run out of questions. This time, my questions led to some information being revealed that I'm incredibly glad I didn't know earlier, and it's now been added to the list of things I've thanked someone for, for keeping it to themselves.

The first on this list actually came from my midwife, when I went back for my six week checkup. We talked over how everything had gone, and I mentioned the fact that this labor had just seemed...weird, for lack of a better term. Things never seemed to really get rolling, so it took me quite a while to realize that I was actually in labor, after a week of on-and-off contractions. It was then that she told me that false labor like that is often (but not always) caused by a baby that has something wrong with it, and early labor (mine started at 36 weeks) is often another indication. The red flag was waving before Brandt was ever born, but she spared me that knowledge, so I wouldn't have to think about it during labor.

I'm so glad she didn't tell me.

Poor kiddo can't figure out how
to uncross his eyes.

The second has oddly come about because of a claim we've been fighting our insurance over. When the doctors at Benefis decided that they needed to fly Brandt out to Seattle, they had a list of companies that could provide the service for us. The plane at Benefis was the first option, but it was busy transporting another patient. The plane (or helicopter) at Seattle Children's was next, but it, too, was busy. Both of them had wait times of 6-8 hours. Plan C was a company out of Spokane, and as they were the only ones available, they got the job, but this company isn't in network with the insurance company. In the process of trying to convince insurance to pay up, they told us that if we could provide a letter from the doctor in charge of this particular decision stating that it was medically necessary and there were no other options, then we could probably win it. So I ran it by Ruggerie today.

To be honest, I wasn't sure why they hadn't just waited a few hours and sent him on a plane that was a little more convenient. All they were doing was transporting him from one hospital, where he was on oxygen and a prostaglandin, to another hospital where he was put on oxygen and prostaglandin. So why, I asked him, were they so impatient?

"Because he could have crashed at any minute, and we needed him to be at the hospital where they could take care of him if that happened."

Big brother trying to calm him down
by holding his hand. Didn't quite
work.

Oh.

I'm glad they didn't tell me that, that day.

I had no idea that every time I updated the blog with "He's stable, everything looks fine," that there was actually another very real option that we never had to contend with.

Lastly was another statement dropped on me today as a result of my questions. I can't decide if those are actually beneficial or if they're going to end up leading to an information overload one of these days. It had been mentioned in Seattle that there was a chance of a heart transplant being necessary somewhere down the road. Not much had been said about it, so I put it out of my head for the duration of our stay, but I brought it up again today. I wanted to know what the chances were, in Brandt's case, for that to be necessary.

He just gave me a half smile and said, "It's not if. It's when."

I'm glad I didn't know that, while we were trying to wade through the newness of the original surgery. The Fontan procedure, which I thought was a permanent fix, is apparently nothing more than a long-term stop-gap. Redirecting the blue blood around his heart makes the heart push the blood quite a bit further before it circles back around, and that puts a lot of extra strain on it. It will function, but not forever. And when it gets to the point where functionality is limited and his quality of life starts to deteriorate, we'll move on to Phase 4: Transplant. This could be any time from immediately after the third surgery (unlikely) to when he's 50 or 60 years old, but more likely, it will become necessary in his late teens to early twenties. In other words, we still have a lot of time to enjoy him before we have to even start thinking about that part of it.

It's funny...out of all the things I've ever been thankful for, I never imagined that I would add "being left in the dark" to the list. But sometimes, there's a time and a place for this kind of information to be passed along. I'm glad to know all of this now, but I'm grateful I didn't know it earlier.