Maybe a Glimmer?

I gather many of you did not quite know what to think of the last post from Thursday regarding his check up. In a nutshell, here's how we took the news: DEVASTATED!
While nothing is imminent, it sounded to us like our best case scenario was that his function could improve with some simple changes to the pacemaker. Worse case scenario is that this is actually a life threatening disease-one for which there is no cure.

Well, one test we had done yesterday was that notorious BNP to measure heart failure. We were kind of expecting it to be elevated above what it was in October since his echo and physical exam are showing that his heart function is decreased. In October, 8 weeks after his surgery and when he was absolutely doing phenomenally heart-wise, his BNP was 1800 (normal is under 100). Guess what it was yesterday? 439! It has dropped significantly so it's quite puzzling to me that he could actually be getting worse. I haven't heard back from the doctor yet about what this may or may not mean, but for the moment we're taking it as the best news we've had all week! Hope is the new theme around here... for the day, anyway!

Side note: He's developed a nasty rash and it's been narrowed down to one of two possibilities. Either it's an allergy to penicillin or it's Mono. We get the lab results on Monday to determine if it's mono. He's stopped the antibiotics he was on for his ears and whatever bug he had and his ears looked great today.

Cardio Appt. Update

Connie saw Dr. Bromberg this morning. Here are his new numbers... He's grown two inches (now 38 in.) but hasn't gained any weight since late September. His BP, HR and SATs were all pretty much exactly the same as his last visit. He was echoed because there were concerns about a decrease in his left ventricular function and the aortic valve leakage worsening as well. We were hoping that things just looked different on that December echo because it was not the same tech. Well, today's echo did confirm that things are not as good as they were in the early fall. On numbers alone, Connie's ejection fraction (the measurement of how efficiently the heart is squeezing/pumping) before valve repair (when he was super sick)was 32%. After his August surgery that climbed to somewhere in the mid to upper 50's, around 56%. Today the numbers we got were in the low 40's. The tech kept remeasuring as she would get a 40% but swear it looked like a better squeeze than 40%. No matter how many different times she tried, it never got higher than 44%. Meanwhile, he's not showing any signs of being in heart failure (a good thing) other than those two little episodes in December where he'd have a sustained high resting heart rate and vomit for no reason.

So, after thinking a lot about it, Dr. Bromberg has come up with a plan. He's seen lots of cases where simply changing the way the pacemaker does it's job can make a big difference and improve LV function. That's what we'll try first. Today he reset the pacemaker to no longer force the ventricle to beat in accordance with the atrium. Before the technology got as good as it is now, that's how all young children used to be paced. It is theoretically less efficient, but for someone with high atrial rates, it can prevent the ventricle from overworking along with the atria. We are to go back in 2 months to do another echo and labwork and compare it with today's.

If we do not see improvement, we may be looking at a case of dilated cardiomyopathy. It's highlighted so you can read what exactly that is. Here are possible treatment options for it. The one he mentioned specifically was adding a beta blocker, Carvidilol.

Oh, and his pulmonary valve (we think) appears to be leaking more. The murmur is louder and echo appears to confirm it. This was actually our bit of good news from the appointment because if it has to happen, it's better that it's this valve rather than the aortic or mitral.

This news brought up the conversations/fears about future surgeries or transplant and Dr. Bromberg says we're still a ways off on those discussions. He said he had a patient that he said was probably his sickest ever who had cardiomyopathy and he treated him with drugs and 9yrs later he's still here and still hasn't been transplanted. The good news is that if it is dilated cardiomyopathy, Connie is still symptom free and we might be the lucky ones that are catching it early. There is no cure, but we may be able to reverse or at least stall the damage.

This is why frequent check ups are so important for these kiddos! Connie looks and acts fine. He did have a BNP level drawn in Sept or Oct that in retrospect probably should have been a little bit lower (that's that blood test that detects heart failure). You can't just look at one thing. But with the BNP, the echo, and the exam all pointing to his little heart working harder, it probably would just be a matter of time before it caught up with him and he became symptomatic. Hopefully we'll get some good news in 2 months that shows that he just needed to be paced in a different way. In the meantime, we ask for your prayers. Specifically for his heart function to improve and for him to stay symptom free. It probably wouldn't hurt either to ask God to help him gain a pound or two.

We are puzzled by this development, but keep repeating to ourselves the words that God spoke to my mom when he was so sick after his first surgery-that Connie would live a long and happy life. There are times like this when we question how can that be possible? If he ends up needing a transplant it is almost a guarantee that we will outlive him. Thankfully, we are not at that place so we will continue to trust and have faith and pray. Back when we thought he'd be blind and severely cognitively delayed we certainly didn't imagine we'd ever see him as happy and normal and smart as he is today, but look what God did for him then!