Waiting.....

There has been a lot of concern as of late that Max has been in congestive heart failure (it’s not as bad as it sounds it just means that the heart does not squeeze strongly enough causing the lungs to fill with fluid) so I have been spending more than my share of time with telephones surgically implanted in my ear talking to the folks at Johns Hopkins.

This concern has been based on a number of things, most importantly on the very wet cough Max has had for the last six weeks or so. Our pediatrician has put Max on courses of steroids and antibiotics and nothing seems to clear the cough so last week we had a chest x-ray to rule out allergies, respiratory infection. etc. When the chest x-ray showed no signs of anything as mundane as bronchitis or the like the cardiology team at Hopkins was even more worried that Max’s aortic valve was deteriorating further. Because we already had appointments set up in Tucson yesterday with a new cardiologist and Max’s local cardiac surgeon the plan was to get the echocardiogram done and overnight it to Hopkins for their evaluation.

So yesterday brought both good and bad news, it seems the echo didn’t look any worse than the one done back in March while we were in Baltimore, at least as far as the cardiologist could see. This takes the “fire drill” atmosphere out of the picture…..that is until Hopkins looks at it and then all bets are off. That’s the good news. The bad news is that in speaking to Dr. Teodori (Max’s original cardiac surgeon) the feeling is that this quick change in the leakage of Max’s aortic valve is a pretty serious medical finding. Now I know that this seems like a “no brainer” in that valve leakage is NEVER a good thing but in this case it’s even worse because Dr. T never, ever, ever says something is bad unless it’s really, really bad. I have looked to this man for nine years as the gauge by which I measure how much trouble we’re in, he’s always been dead on so hearing from him that he was pretty concerned has me spinning.

And so we sit and wait, wait for Hopkins to say all’s clear for now and then we wait another three months and start the process of echos and EKGs all over again until it is decided that we can wait no longer. Have I mentioned that I stink at waiting?