Dilated Cardiomyopathy, White blood count and Lungs

That's the 3 things wrong with our little boy. I'm sorry I haven't updated the blog shortly after our visit on Thursday. I've been a little numb. Not sure what to say, you know?

So here's the short (and long) of it:

• Monkeyman's left heart function (or ejection fraction) is up from 34% in September, to 36% in October and 42% in December. So that's excellent, really excellent news. Yay!!!
• The left wall is unchanged. Still too thin. This is called dilated cardiomyopathy, but, since his left heart isn't enlarged, and his right heart is almost back to normal size, he's technically not in cardiomyopathy yet. He's not in congestive heart failure, in other words. But, he has heart disease. Or a heart defect. Whatever you want to call it. His heart muscle is damaged permantently, and won't ever recover again. No medication nor surgery can fix this.
• His blood tests have been abnormal twice in a row, 2 months apart. No changes or improvements. His Leukocytes, neutrofils and if I've heard correctly, lymphocytes are all abnormally low. And his transferine is too high. The cardiologist doesn't want to elaborate much on this, or she doesn't know what it all means, and has referred us back to the pead for end of January.
• His lung x-ray still bothers her. She's not happy with it showing something twice in a row either, without it being clear what's wrong.  The radiologists said it's either infective, or cardio-vascular in origin. Infective would mean swollen lymphnodes in the lungs, and the cardiologist can't find any on the echo (sonar). And to rule out cardio-vascular we would have to take Monkeyman for a scan (probably MRI), but she's not ready to put him through that trauma yet. So we're repeating the x-ray in January and take it from there.
• She still believes everything is due to an underlying mitochondrial disease. That it causes the tiredness, caused the damage to the heart wall, etc.

So the plan of action is repeat the x-ray in mid January after the school holidays. Then see the cardiologist for a last, wrap-up visit. Then we'd go see the mitochondrial specialist she's referring us to. She'll give us a reference letter with our next visit. And we'll see the pead, maybe also repeating the bloodtests. And, if the cardiologist feels it necessary, we'll look at doing an MRI around February. Thereafter, we'd only need to see her yearly, to keep an eye on Monkeyman's cardiomyopathy. Currently, he's stable. This can change at any time in the future. It's difficult to wrap my mind around suddenly being the mom to a heart-defect child. He's not allowed to play rugby, hockey, run long distance, climb mountains, etc. No high impact or extreme sports.

There's some updates I need to do on Boeboe as well. But I'd get to that later on in the holiday. For now, the most important thing, is that she passed!!! Boeboe passed grade 4!! We're so, so very happy and relieved and ecstatic. So for now, we're keeping her in mainstream, hoping and praying that with the same hard work, dedication and help from the teachers, we can pull her through grade 5 as well next year.

So, we're enjoying the summer holidays. Yesterday, we took the 3 eldest kids to their grandparents for a week of fun, swimming and being spoilt rotten with treats and dedicated time! I'm so happy for their sake that they get to have these holidays with the grandparents. I never had that, but I can see how much it means to each one of them. We don't like not seeing them for a whole week, not at all. The house is quiet, empty, too neat. Poor Peanut is really missing them as well. She loves talking to them on the phone though! I'm trying to spend more time with her, and also trying to organise the kids rooms. It helps, keeping busy. I can't dwell on things too much, not yet.