Last week Mr. Kimble had two doctor's appointments. One with our Pediatrician and the other with his Cardiologist. First, we'll discuss the Pediatrician appointment.
Things seem pretty normal with Kimble's growth pattern. He weighed in at 26 pounds even, and was 33 inches tall. This puts him at 25th percentile for both height and weight. He's following his growth curve nicely, and for a cardiac baby, is doing quite well with growing big and strong. He does well physically, and seems to be able to do the same things as other kids his age. The only area of concern seems to be his speech, and thus he is a bit behind in that department. However, I don't think that's necessarily related to his cardiac issues. All my kids seemed to take until they were closer to 3 years old, to begin communicating. Although Kimble happily talks (babbles) and has about 15 words that he says, he is delayed. The doctor left it up to me to get some speech therapy for him, through the school district, if I so choose.
Other than that, he got good scores all around, and is very healthy. Go Kimble!
The next day, we saw his Cardiologist. As always, we have an echocardiogram (ultrasound of the heart) to measure all his flows and velocities and measurements and volumes. We do this at every appointment so that we can see, from visit to visit, if his heart is growing or if any problems arise, such as narrowing in his arteries and valves.
Dr. Brames continues to be optimistic about Kimble's heart growth. He said we see a tiny bit of growth since the last visit. His right ventricle is handling the bloodflow without difficulty, and all his pressures seem good. He actually said there is more blood flowing to the lungs via the pulmonary valve (which comes from the right ventricle) than through his re-directed superior vena cava (which was surgically attached to the pulmonary artery en route to the lungs during his last surgical procedure, called The Glenn). This gives us proof that his high pressure/low pressure bloodflows are capable and aren't creating a stressful heart. All good news.
The plan for Kimble? As of right now, we go another four months between visits, unless something comes up. Kimble's energy levels seem good, but we are encouraged to let him test his limits a bit more. There was question, lately, that Kimble seemed to run out of energy during a simple walk around the block on Halloween. Because he could have simply been a decisive 2 year old who didn't want to do what I wanted him to do, we don't really know if his energy failed him. So we are just going to let him run around more, and see if his body can handle it. Toddlers with heart issues present in different ways. Some do have more energy than others. Something to keep an eye on, for sure.
Something came up during our discussion, that has been brought up before. With Kimble's right heart doing well and growing, there is a possibility that the next surgery he will have, will be a reversal of The Glenn. What that means is, they will unattach the superior vena cava from his pulmonary valve, putting it back where it was, and letting the bloodflow from the top half of his body go back into the right heart after it's done with its cycle, and let the right ventricle pump it to the lungs to get oxygen, before coming back to the left heart to begin it's cycle through the body again.
The trick seems to be whether his tricuspid valve will be able to handle the blood flow volume and pressures. That faulty valve (with the defect being that it is unformed and with a very narrow opening) has limited the amount of bloodflow that was able to get into the right ventricle, which caused the right ventricle to not form. Then, because his pulmonary valve didn't form either, there was no way for the blood to escape the right side of the heart via the pumping chamber. This was all discovered en utero.
Anyway, it seems this tricuspid valve is really the instigator of Kimble's defects. What a troublemaker. So that little deformed and narrow valve is where our focus is. Will it grow? Not really. Our doctor compared it to a door frame. If you have a faulty door frame, you can't (in this instance) make the door frame bigger, but you can try to help the door swing open better. The tricuspid valve has three leaflets, if you will, that open and close as the blood goes through it. Those leaflets are faulty, and in a patient so young, can't really be fixed.
Dr. Brames seems to believe that if we reverse the Glenn, that simply the sheer volume of bloodflow might stretch out his valve a bit, and that because there would be no other place for the blood volume to go, it would become better functioning through force, essentially. The right ventrical seems to have grown enough to handle the entire body's bloodflow (hopefully) and the pulmonary valve, although it's not a valve per say, is working well. All of this will be discussed in the near future, and will be finalized after some cath lab testing and 3d MRIs, which will happen about this time next year. Until then, we have this idea to nibble on, and pray that all will turn out well.