It's That Time Again

Time for another cardiology visit, that is. Three months had passed since Ayden's last trip to see Dr. K, meaning he was due. So yesterday, I took the morning off work, we got Ayden up early, and off to see Dr. K we went.

As before, we had a scheduled diuretic wean one week before the visit. As before, beyond having an x-ray, getting height and weight, and checking extremity blood pressures and oxygen levels, we didn't know what would be involved in the visit. Last time, it was everything. For this visit, the list ended up being shorter. The only additional things were an ECHO (with a brief followup by Dr. K, herself) and a blood draw.

Once again, Ayden behaved incredibly well. He didn't complain a single bit during the ECHO. Given that he has pretty much mastered crawling, I was quite impressed that he was willing to lay on his back for half an hour while a technician did the test. Granted, Allison and I did our best to keep him occupied with light up toys and the like. Regardless, his level of cooperation was more than I could have ever expected. Instead of getting mad at the technician - which would be a completely reasonable way for a 16 month old to react - Ayden wanted the tech to join in on the fun he was having. Numerous times, Ayden handed one of his toys to the tech to play with. It actually got to the point that we had to stop him from doing it so the ECHO could progress.

The first go 'round with the ECHO, they got pictures of everything they wanted, save for one - a view of his right superior vena cava (SVC for short, and not to be confused with SVT).

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Let's pause here for a brief anatomy lesson. Humans have an SVC and an inferior vena cava (IVC). They return oxygen-depleted blood from the body back to the right side of the heart, which in turn sends that blood to the lungs to be oxygenated. The SVC returns blood from the top half of the body (roughly), while the IVC does the same for the bottom half (again, roughly). If you are a longtime follower of this blog, you will remember that the right side of the heart is the only side that Ayden has. Moreover, you will remember that his body is being rewired such that the right side does the absolutely necessary, can't live (literally) without it role of the heart's left side - i.e., pumping oxygen rich blood to the body. And if you're really on top of things, you'll recall that surgery #2, the bi-directional Glenn, disconnects the SVC from the heart and ties it directly into the lungs, via passive flow through the pulmonary arteries (the vessels that would normally be transporting blood from the heart to the lungs; there are two of them, one going to each lung, which explains the use of the term "bi-directional," or at least I think it does). So, right now, oxygen depleted blood from the top half of Ayden's body skips his heart and goes straight to his lungs. (NOTE: Surgery #3, the Fontan, does the same thing with the IVC.) Got all that? Great! Let's move on.

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You'll notice, before we had our little anatomy class, I said the technician didn't get a picture of Ayden's right SVC. I know what you're thinking - our lesson talked about an SVC, not SVCs. Why would I refer to a right one, if humans only have one? Well, Ayden is special. He actually has two SVCs. Technically, his second surgery was a bilateral, bi-directional Glenn. The Internet really let me down on providing good information or a useful link, but what little I did find on bilateral SVCs indicates it's found in about 0.5% of the population, or approximately 1 in 200. For persons with congenital heart defects, that rate rises to 5-10%.

Anywho, post-Glenn ECHOs are about many things, but they are especially about checking on the status of the Glenn repair. So, being able to see the Glenn connection for the SVC (or in Ayden's case, the SVCs), not to mention that everything is growing properly and blood is flowing adequately, is kind of important. And that is why Dr. K ended up conducting a mini followup ECHO herself. She wanted to see if she could spot that pesky right SVC. For this mini ECHO, Ayden got to sit up. Again, he was a trooper. And again, he wanted everyone to participate - he even tapped Dr. K on the shoulder with his toy in an attempt to get her attention.

In the end, she found the right SVC hiding behind a bone in Ayden's chest. As with all of the other pictures, she liked what she saw. His tricuspid valve is still leaking some, but she didn't seem too concerned about it. Like the ECHO, the x-rays (he didn't make a peep during them either, which was not the case last time) checked out fine. A week before the next appointment, we'll decrease his diuretic again.

 

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About that next appointment...

When we were done on Thursday, Dr. K shocked us by saying she would see us again in SIX months. She believed Ayden was doing so well that she didn't feel like a return in three months was needed. That was a great thing to hear. When we expressed our shock at not having to return until February, she said the only reason to come in before then would be to wean the diuretics more quickly. In other words, we'd either decrease his dose again in six months, or in three.

Despite how nice it would be to not have to go to the doctor again for six months, we decided to schedule a visit for November. We want to get rid of those diuretics sooner, not later. The sooner we can get rid of them, the sooner we can give Ayden some "encouragement" to start eating, without having to worry so much about him peeing his way to dehydration.

In case it's not clear, when I say "encouragement," I mean making him hungry.

In case it's not clear, when I say "making him hungry," I mean not feeding him for, oh, I don't know, 24 hours or so, in order for him to see the value of consuming food.

And this is something I actually want to do. I want to withhold food from my child for an extended period of time. They might as well go ahead and start engraving my name on the Parent of Year trophy right now. I've got it locked up.

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And finally, here's the plan (when it comes to Ayden, I cringe every time I use that term) for the Fontan: a pre-Fontan cath next spring to check on things and the surgery following in the summer, the goal being to have him home from the hospital before flu season arrives next fall.