Thursday, September 19, 2013

Quick Cardio Update

Jasiu had a cardiology visit on Friday 9/13 and I forgot to update until now, when our awesome Nurse Practitioner called to follow up and see how John is with his new meds change. Did I forget to say how much I love our cardio team ! They are really wonderful and so nice and caring, I will miss them now that our visits are getting spaced out even more, but this is for the best of course so it will be a good change. This last visit had 6 weeks off and our next appointment is in THREE months.

Onto the update... John is doing excellent with his Fontan. His heart function is good, O2 saturation's are great and his chest x-ray is clear. From his last echo, there was some small concern over the narrowing of his aorta, where it was repaired 2.5 years ago during his Norwood surgery so we had an impromptu echo just to make sure it's not getting worse. Side note: this is not new, we have seen this on echo since the beginning and even went into the cath lab a year and a half ago to make sure it does not need a stint to keep it open and at that time the narrowing was not significant enough to warrant a stint. So it very well may just be that Jasiu's aorta is a bit more narrow and that's just another thing making Jasiu unique. But to be on a safe side, as Dr. H likes to be, we did the echo to check it out. I don't mind at all because it also puts me at ease a bit to know things are looking good in there. And they are so far it is not getting any more narrow than it was. I had a long talk with Dr. H about Jasiu with his various "uniqueness es" and he decided that we will be slowly weaning the diuretics these next two weeks to go down to none and wrote a script for a diuretic, just as needed, if I notice any prolonged puffiness once in a while - Read: more than just the usual morning puffy eyes that usually disappear within the hour. But his diuretic of choice is Matolizone, not Lasix, since we don't want to chance Lasix not working the way it didn't post Fontan. Next he decided that Jasiu will also benefit from going on a small dose of Enalapril, heart medicine, that will help his blood pressure and the pumping of the heart. Many kids with HLHS are on enalapril as a "maintenance" drug to help keep it strong. So after we are done with the diuretics, I still have a new medicine in the fridge until the dose is big enough to allow for pill form instead of compounding into a liquid (which must be refrigerated). So we have been given a 3 month pass and will do a whole work up again, this time we will be on the echo schedule so the appointment should be over quicker, this one lasted 3 hours! (but if you want the best I think a few hour appointment is a small price to pay in the long run).

A more fun thing to look forward to is another picnic with all of our heart warriors and medical staff hosted by our very own Dr. Illbawi. Jasiu has been practicing so that he can say Illbawi when he finally meets him. I'll be sure to post pictures. Thank you for your continued prayers and support.

Just a walk/ jogg pit stop with mommy

3 hour appointments are exhausting - waiting for Dr. H.

keeping entertained

favorite part X-rays - say cheeeeeese

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