Maya is doing very well. You kind of hate to say it because you don't want to jinx it, but there's really no other way to say it. Brandy and I slept from around 3:30 to 5:30 while super nurse Stephanie Shook watched her. Small world as Stephanie lives in New Braunfels off of 306 and is involved in the MOPS organization where we have a number of mutual friends. Very sweet and good at her job!
Around 7 or 8 last night Dr. Kupferschmid (Kup) came in to look in on Maya. He is also working on the nine day old little boy in the room next door and came in after that surgery. I had a couple of questions to ask him and my first one was to see how he felt about how the operation went. Going in the fears were a failed repair that made a mechanical valve necessary or some setback in the procedure that precipitated other problems.
During the surgery we learned from the OR nurse (who called us with updates at certain times like when they were safely in the chest, effecting the repair, taking her off bypass, closing, etc.) that they had been unable to place a ring in the annulus to shape it properly because Maya's annulus was just to small for the smallest ring used in the US for this, a #24. If I had to guess, I would say that is 24 millimeter or about 1 inch. Instead, he put stitches on both sides of the valve to pull the leaflets closer together to effect a better seal when the valve closes upon the ventricle's contraction. They also did not cut the tethering cords on the smaller leaflet for it to open more as was planned. So, knowing these things, I didn't know how Kup felt about what he'd been able to do. His answer was, "This is the best of all possible outcomes," which brought tears to my eyes and still does as I write this.
He explained that while the stitching he'd used to pull the sides of the valve together don't work on some people permanently like a ring, they also sometimes work for a lifetime. Where a ring keeps the annulus from dilating on a 360 degree basis, it would also have to be replaced during another surgery in 15 years or so. These stitches may not work because unlike the ring they would allow for dilation of the annulus in the unstitched areas if the heart continues to grow in an abnormal way. Or, this could be a permanent fix. Having that as an possible open option was one that going into this surgery I understood was off the table, so that feels sort of like getting pulled over for a traffic violation and the policeman giving you $500 and a get out of jail free card for being his 1000th "customer."
When I asked him why they'd not cut the tethering cords on the smaller leaflet, he explained that it was not necessary and showed us a series of four pictures of the larger leaflet and the repair he made. Brandy may post them later, but the first two pics show the larger leaflet sitting in the annulus (which is smaller than 1" in diameter) and the cleft they thought was like an indention or scalloped area before was actually about 8 millimeters wide! Yes, this is about one third of the entire area to be closed when the valve closed. Looking at it, it looks like a sort of half of a cookie that one of the kids has taken a big bite out of the rounded side. When the heart is full of blood and working, the sides of the cleft were pressed together, so any picture (echo) taken from the side would not reveal it. Looking down on it from the top without blood in the heart, though, it is apparent that Maya has been living her life with a heart that was operating at maybe half its efficiency. I have no idea how she has been doing all the things she has from a full day at Schlitterbahn to jumping on the trampoline in 100 degree weather.
Needless to say, we now know why she was always cold in the water, could not gain weight, and has become more easily tired lately. Poor thing just didn't know she was paddling with an oar with as many holes in it as she had wood in the water. The third and fourth pictures show how he he sewed the two sides of the leaflet together and Dr. Brownlee (cardiologist) showed me on video of the post-op transesophageal echocardiogram that the leakage is now very minor. Pre-op it was considered severe. She now has what most people would call a faint heart murmur. I cannot hear the leak through a stethoscope at all as her heart now has a very crisp beat. Before, the second beat in the normal thump-thump of the heartbeat sound was more like thump-biiiissssshhh.
After the surgery Maya woke up with the normal after surgery misery: sore, dry throat, disoriented with tubes, drains, catheter, EKG type stickers all over including the forehead, IVs in the neck and each limb, pain, etc. The main thing she battled was probably just thirst. Even though they are getting liquids through the IVs, her throat was so dry that she could barely speak to tell us she wanted water. Over the period from about 1:30pm when we got into ICU until about 9pm she was able to hold down first water sponged into her mouth a cc at a time, then three ice chips every ten minutes, then some apple juice, and then before we left her asleep at about 3:30, a popsicle. Mommy, champion that she is, worked through all those tense, tear filled negotiations like she always does everything: beautifully. Our nurse early last night, Lorraine, was a very serious, competent professional. By the time Lorraine left, she was putty in Maya's hands. Thanks, Lorraine!
When we left her, Maya's temperature was hovering around 99.7. Right now the main concern would be an infection. With methicillin (sp?--way too lazy to look that up right now) resistant staph infections out there, this is really scary with heart surgeries. When we came back in at 6am, her temperature was 98.6. So far, so good.
I could write a million other things but I think this covers most of it.
1 week ago