Our "normal" day last week didn't actually turn out to be that way because Nick had a pretty tough day. But the search goes on...
Just wanted to update you on things around here. We thank you so much for your calls and prayers and offers of help. We have been very blessed by all the concern shown for Nick and the family.
Here is a quick update on where we are now:
Nick's echo cardiogram showed a below-normal ejection fraction. That means his left ventricle is pumping out less oxygenated blood than it should be. That is what is causing/contributing to Nick's fatigue. He is short of breath after any activity at this point.
He wore a Holter monitor for 24 hours this week. As the nurse was placing it, she said, "Here is your Holter monitor. Since you are getting one, I can pretty much guarantee you won't have any symptoms today, so enjoy feeling good!" and she was right. Nick did not have any heart pain during the time he wore it. (Is his heart being mischievous?) What they did find were two instances of a racing heart beat (above 160 bpm) during times that Nick was simply sitting in a chair.
He is still experiencing almost constant headaches, varying in type and severity. There are also other symptoms that come and go.
The question is why are these things happening? We don't really know yet. We do know a lot of things--the brain MRI was normal, his CT looked ok--both good things and we were able to rule out some serious illnesses with those tests. A low ejection fraction can mean cardiomyopathy, for instance, which we were able to rule out with the chest x-ray and CT. He's had his blood drawn several times (his least favorite thing) and we've tested him for nearly everything under the sun. We are currently waiting on some results of blood that was sent in this morning.
We will be seeking a second opinion from a pediatric cardiologist at Johns Hopkins. We are waiting on our doctor to get that scheduled, because if we make the appt ourselves, we can't get in until June! (The secretary told me that, then said, "Is that ok?" Um, no, not really. Would anyone with a referral to a pediatric cardiologist want to wait 2 months to be seen?) We also have possible follow-ups with endocrinology depending on the results of the most recent blood tests.
And for now, we're just taking it day by day. Nick's activity is pretty limited, due in part to his fatigue, and in part to the fact that we can't take a risk on a strenuous activity with his heart acting the way it is.
Thanks for your continued prayers. We most definitely cherish them.