Sat-tastic

Yesterday Luna and I ventured into Boston for her day of pre-cath/pre-Fontan labs. The day was long, the traffic crummy, the weather crummier.

But the doctors, nurses and other specialists at the hospital always make it right. This time, just as we were leaving, a woman came rushing into the waiting room. In her arms, boxed toys were piled high above her chin. Luna managed to grab a Little People Pirate set just as we were leaving.

Luna had X-Rays, blood work, EKG, weight, height, vitals and blood oxygen saturation's, AKA sats, taken. So far, everything looks fine.

But mysteriously her sats are up. WAY up. Luna, very gingerly and sweetly offered up her index finger so the cardiac assistant could fasten a tiny sensor on her appendage. Luna held her hand perfectly steady, and immediately the blood saturation meter took it's read. A steady '94' glared on the machine. There are people out there, who have zero heart issues who might read that. The most anyone can read is 100.

The 'sats', probably more than any other vital, is what keeps us heart parents on our toes. Dropping sats and in for a cath our kids go. High sats, and in for a cath they go.


The catheter fellow I spoke with thought that perhaps she had a venous collateral. Collateral are like streams. The body, in Luna's case, with it's tricked-out circulatory system, gets hungry for oxygen. The result is tributaries shoot off the main veins, and shoot up to the lungs, or sometimes down into other organs, in effort to give the body more oxygen. But really it's not effective, and if we let all these collaterals jump ship off their main rivers, the entire body and all it's organs would not be supported.

I asked the cath fellow a hypothetical question: if Luna's sats are high enough, why even move forward with the Fontan? He explained that the body would be fine with partial circulatory; as is Luna is now, but after say 10 years of this, one would run the risk of stroke, or maybe even death. One main reason, that her lower circulatory system skips her kidneys, which is a natural filter for things like small clots. Blood clots, even those that can only been seen under a microscope, can still cause a lot of grief. Stroke probably being the biggest risk.

Come Tuesday we'll find out if any rebel branches have shot off the main rivers to find recluse on other parts of Luna's body. Luna is 'first case', which means we only have to starve her till 7:30 am-at which time, baring-and fingers crossed-no emergency case bumps her out for a later slot-she'll be given the 'happy juice' before she is brought back for the 3-4 hour procedure. If the doctors find any pesky collaterals, they'll be given a good blast of heat-where upon they will recoil into their submission, bringing Luna's circulatory system back to it's pre-Fontan normalcy.

The renegade blood vessle.

Luna is supposed to go in for her cardiac catheter this week. I say supposed to, because as of this writing she has a pretty nasty cold and cough. Adults who have any type of catheter (angioplasty is a similar procedure) are awake for the procedure. In fact, I just had a conversation over the weekend with the husband of a good friend of mine. He underwent an exploratory cardiac catheter in his early 20's-and was awake for the procedure. I was relieved when he told me he didn't feel a thing. Strange, to think that a tiny probe with an equally tiny balloon and camera is inserted into the femoral artery (the one located at the pelvis), then snaked-up through one's veins, and in Luna's case, through her heart, yet, no sensation of pain or otherwise is felt. Amazing.

But since Luna is just 13 months, and we can hardly expect her to lay still for the hour-plus-long procedure, she will be fully anesthestisized. And of course because of the precarious-and still largely unknown-state of the body during anesthesia, she has to go in to this procedure totally healthy. Later today I'll call the doctor to see what they say about her cough.

You might be wondering why Luna is having a cardiac catheter, and really the story is quite fascinating. For the past several months, her doctors have been trying to get a good look at things Post-Glenn. Because of the nature of her anatomy-that of course being the dextrocardia, and the fact that even for a dextro kid her anatomy is still unusual (her heart is not only located on the right side of her body, and flipped mirror-image, but also sits on a different plane than most people with dextrocardia), the doctors require all the tools they can gather so they may translate what they are seeing (in one case this resulted in a 3-D imagery taken during her last sedated echo...to which Anthem declared they wouldn't contribe to the $616 procedure because it was 'too specialized' and 'not in their contract').

The 3-D imagery did produce the pictures that provided some important clues about what Luna's team thought they were seeing. It was something that I had never heard of, something I certainly never considered could ever happen. A blood vessel had sprouted off Luna's aorta.

It's thought that some time before Luna went in for her Glenn Operation, when her sats would have been at their lowest, her body decided it was going to do what it needed to get more oxygen to her lungs. If you imagine the aorta looking like a candy cane-oh, and if you need a quick refresher: the aorta is the biggest artery in the body, it carries oxygenated blood to the heart, lungs and rest of the body. Well, Luna's sprouted a small blood vessel. Basically, imagine a small stream of oxygenated blood that shoots off her candy cane and connects directly to her lungs. As Luna's card explained this to me, I felt that familiar sinking feeling. "Is this a good thing or a bad thing?" I needed to quickly reduce the news to either good or bad. It turns out that though in a way it's good, because it shows just how incredibly resilient Miss Luna's body is; her doctors don't want her sprouting all kinds of blood vessels so when she goes in for her cath, this will be cauterized.

This also explains why her sats have been hovering in the low 90's. I expressed to Luna's cardiologist how about 2 months ago I heard Luna gasping and choking in her crib. She had a cold, and was struggling to sleep with a stuffed nose and no way to relieve herself. I brought her into our bed-fully expecting that his may be the first time we have to bring Luna to the ER-because, well she just seemed like a sick kid. After a lot of protesting-aka full-out screaming-I got the oximeter strapped to her tiny finger. The results were astounding. Her sats were ranging from 88-90. I couldn't believe what I saw, so I then tested myself and got the routine 98, 99 and 100. Luna was congested, yet her sats were high. I put her back in her crib, where she slept like, well a baby, and called her card in the morning to relay the incredible story.

That had confirmed it-there was no question that her aorta had sprouted a blood vessel which is why her sats are very. close. to. normal.

So, bearing Luna recovers by this coming Wednesday, she will go in to Children's Hospital Boston for the cardiac cath. The cath will serve three purposes: cauterize the errant blood vessel, enlarge her pesky left pulmonary artery, and provide a detailed map of what is going on inside Luna's veins and heart.

The procedure requires a night stay at the hospital, and providing all goes to plan we'll be home Thursday afternoon. Until then...