As usual, I call and the lady scheduled us with ease. I lucked out, actually because our doctor only comes to our area on Fridays and her schedule is usually jam-packed. Natalie was scheduled for Friday, June 15th. I called June 13th.
We're also lucky that we can feel like the appointment is pushed to the back of our minds for a while. That's another post for another day, but that really is something sweet to savor.
The appointment was the easiest one yet. Usually it's just me taking Natalie and usually, I have to take James with me, too. So the 3 of us all go and as the kids get older it seems to be easier in keeping them entertained while we're there. The appointments can go anywhere from an hour or 2 so you never really know how long you have to wait. But this was the easiest one... and I give this little girl every ounce of credit:
EKG! This, I promise and swear to you, has never happened before! She hates the stickers that they have to use. She does cry when it's time to take them off because those suckers do hurt a little. Worst way to pull out hair. But she was giggling and smiling. This child... amazing.
nightmare of it all. Well those days are long gone because look.at.my.child. SHE'S LAYING THERE HAPPILY. And she laid for at least a half an hour. The only issue was that she wouldn't stop giggling and the tech was trying to get good shots of her heart. But the tech was making her giggle, too! I can stare at these photos all day long.
Natalie is a young lady now. Who only throws things like beach balls and fake plastic food now. She even stared at the computer screen often to try and figure out the pictures. She was very curious and even asked questions. She would get so excited when the tech would say something like "oh that's a great shot Natalie!"
Now I don't know if this will continue to be a thing for Natalie.. being perfect during her tests.. and I don't expect it to be every time. But I am telling you.. I relished in this moment. I still am.
Now for the results!
Natalie doesn't have to be seen again until December!! The leaky aortic valve was leaky this time, which is fantastic. Her pulse ox was about 87-89% which is also fantastic. Her BP was perfect and she is .... 44 1/2" tall and 52 pounds! Wow.
Natalie's fenestration is still open from her Fontan surgery.. here's more to explain what the fenestration is in post-Fontan patients:
"A fenestration (window) is made in the baffle as a safety or pop-off valve through which blue blood may cross if blood pressure in the lungs becomes too high. Also, a small amount of blue blood will return to the right atrium, in an area called the coronary sinus, from the coronary veins of the heart muscle itself. (Recall that the coronary arteries, arising at the beginning of the aorta, supply oxygen to the heart muscle.) The coronary veins emptying into the right atrium plus the effect of the fenestration result in slightly less-than-normal oxygen levels (90 percent to 95 percent) after completion of Stage III." -CHD UK
That was the biggest discussion that we had at her appointment. When will it be closed? Is she a good candidate now? Why did she have such a freaky blue spell that lasted a full hour a few weeks ago?
The answer to all of this is that Natalie can over-exert herself and it can show in the form of a blue spell. Because she's perfectly stable and thriving there's no need to fix anything that's not broken. Well okay, her heart is a broken heart but you get the idea. Her surgeries are working perfectly and there's no reason to rush her into a cath lab to close the little window yet. We'll know more as Natalie's body tells us that she's ready for it to be closed. It shouldn't happen suddenly, it should be a gradual decline but with enough time to plan accordingly. When the radar goes off that "hey.. something is different with Natalie" then we could be looking at closing it. Some children goes years and years with this fenestration left open. Some fenestrations close on their own at sea level. Some children need the fenestration closed immediately after the Fontan surgery. As we know.. these children and adult survivors are the 1st of their kind. We learn from history but we mostly learn from the survivor themselves.
Right now, we are learning to just keep enjoying Natalie. We get to enjoy our summer, plan for elementary school, activities, and the future. Have I mentioned how lucky and appreciative we are? Well guess what? We most certainly are. I think the kids agree. Happy It's Officially Summer!