We had our 6 week cardiology appointment today (2 weeks early because our doctor is going on vacation). C had an echo. The patch leak where a stitch either broke or loosened is about the same as it was, as is the mitral valve regurgitation. We've decreased the number of times C gets blood pressure meds to twice a day. This means no more waking up at 1am to feed him medicines. We'll see if he'll start sleeping through the night. Apparently once he's approximately old enough to be in school he's old enough to swallow pills, at which time his meds will be much easier to give.
The lingering issue with an AVSD is the valve. Because the two valves have been rebuilt from the one common valve he was born with, it is never a good as a correctly formed valve and it leaks. Our goal is to keep it viable as long as possible. Hopefully C will never need a replacement valve. If he does, hopefully they will have a viable regenerative tissue valve by then. Currently children who have to have a new valve end up with a mechanical valve and blood thinners. The theory behind the blood pressure med is that it makes things easier on that leaky valve.
We checked out the little lump we can feel in the middle of the breastbone, its probably part of the wire that they used to close up his breastbone after surgery. Things are really settling down. Our next cardiology appointment will be in 3 months.
CHD Awareness Week Facts: Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. In 2005, 192,000 life-years were lost before age 55 in the United States due to congenital heart disease. In 2004, hospital costs totaled $2.6 billion. Facts from the American Heart Association (http://www.americanheart.org/presenter.jhtml?identifier=12012)
Mason has that same hump, too!
ReplyDeleteGood update! I'm glad you got to cut out the middle of the night med!