An echocardiogram (ultrasound of the heart!) usually lasts about 40 minutes in a dark room (which is why they have a store of light up toys to play with!). Job wears EKG leads and I get to lay on the bed playing with him, but between the gel and the pressure of the probe he's not such a big fan of them. Although, he's such a cheerful and content little guy that even his cries of protest aren't too ridiculous. The hardest part of the echo is when they look at his aortic arch because I have to lift him up on the bed, at his neck, so they can get the probe up under his neck rolls. It's awkward and uncomfortable.
The results of the echo were essentially unchanged from his last echo before surgery, which is a good thing. We have been concerned that the increased volume of blood from his fistula would increase the leakiness of his valve, but there doesn't seem to be a change. This is such a relief!
Tricuspid valve regurgitation is Job's biggest cardiac problem at present. The Tricuspid valve runs between the right atrium and the right ventricle and is supposed to prevent blood flowing back, or leaking, into the atrium. Of course, Job only has one ventricle or pumping chamber and one atrium (as the separation between the right and left atrium was removed so his red and blood blood mix together in a "common atrium" now).
Because the less powerful right atrium is doing all the work (think lawnmower engine) of the non-existent left ventricle (think BMW engine) the stress of this extra work and his reconfigured physiology have enlarged the right ventricle and caused it to regurgitate blood back into the atrium each time the ventricle contracts. We have watched his leakiness increase to the point that it is now well in the moderate range and he will need the valve replaced (with a mechanical or pig or cow valve).
The hope is that we can wait to do this valve replacement until his third open heart surgery, the Fontan. Otherwise that's an extra OHS. And the hope is that he can wait until about 2 years old to get his Fontan (though usually it's done at about 3-4 years old). We at least need to get him to 18 months old or 11 kilos before he can get the Fontan. (Which is part of the stronger push to gain weight.)
His liver was a bit distended and his lungs sounded a bit wet so we upped his lasix quite a bit. He gets lasix twice a day and sprionolactone one a day for his diuretics, omeprazole and erythromycin for his digestion, enalapril twice a day for heart function, and aspirin once a day for anticoagulation. That's only 4 meds in the morning and 6 at night! I'm so thankful! And we hope to start working off his digestive meds soon.
Job's oxygen dependency is a problem, but we think the fistula did it's job and we're seeing gradual improvement. His sats are going up while his oxygen liters per minute (lpm) are going down. We don't have another cardiology appointment UNTIL MAY!!!?! and Dr. Files expects Job to be off oxygen by then. (I'm hoping for like July, but it's been established how skeptical I am of Job's ability to follow expectations.)
So we titrate between 1 lpm and .5 lpm currently, but we're also trying to up his caloric intake and slowly introduce fatty foods and his poor, weak digestive system needs the extra oxygen so it's slow going although there is improvement every week. He's also working really hard in PT and needs extra oxygen for the first few days as we're working on _____ new/more advanced skill. He's done multiple breaks off oxygen though, holding steady sat wise at 75-78% for a good 30-45 minutes! That is such an amazing difference from January where he'd desat to 50% within 3 minutes off oxygen!!
So! Too many technical details, but that's where he's at right now. I think I only updated last week that he's doing "decently well" which is too vague for me and I need my more detailed record written down because I can't keep it in my head with dependable accuracy!
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