ECHO day… I have talked about it in the past; all the anxst that goes into that one day 2 times a year. The weeks of dreading it, the constant eye out for changes to report, the worry that the doctor will say something you didn’t want to hear. Quite frankly it hasn’t been very often that she has given us a good report. The way of heart defects is simple in it’s diffiulties. Best case scenario is ‘wait and see’… I used to hope for a report saying that he was okay now, now I pray for 6 months between visits. It’s a shift in perspective. Living for the moment, enjoying the time we have today because who knows what tomorrow will bring; it’s freeing in some ways and draining in others.
Yesterday the report was not so great, I think Josh has finally left our cardiologist stymied. No kidding… he is constantly doing things that aren’t normal! I wish he would be less extraordinary for a little while.
On to the report; his pulmonary valve has seen very little change (a really really good thing!) However, his tricuspid valve which at the last ECHO was showing a sever leak has now gotten so bad that she said ‘It can’t get any worse’ (basically the valve is there, but it is not functioning as a valve at all, so he might as well not have a valve). The right side of his heart has continued to grow and at this rate we run the risk of further complications which would be new problems for him. He is asymptomatic right now (another good thing) but the question remains, how long can his heart continue to grow at this rate? The other big question of course is why that valve is rejecting so quickly and so horribly. Once upon a time it was the pulmonary valve that rejected (repeatedly), but now the pulmonary is holding but the tricuspid is rejecting… it just makes no sense. (to anyone).
There are valves for the pulmonary that can be replaced in the catheterization lab, but there have not been many (that our doctor knows of) kids who have needed the Tvalve replaced like this so we don’t know if it can be done without open heart. Our cardiologist has said she will speak with the cath. surgeon to find out how possible it might be… that is something you can pray for… if we have to do something I would prefer to keep his chest closed.
So for now, we wait… we wait for answers from the Cath surgeon, we wait to see the rate that his heart is growing and the trajectory that he is on. We wait for symptoms of heart failure… we wait; and the waiting sucks.
In other news, Josh’s dental surgery is NOT neccesary. Not yet anyway, he will most likely need it when he’s older but we can hold off for a while on that which is really great.
I also had Kaleb’s allergy appointment today and we had some good news there too… we can introduce pecans, walnuts, brazil nuts and hazelnuts… (though I admit I am terrified to do). I did however buy myself some turtles loaded with pecans to treat myself after this week… I didn’t share them with him, but I kissed him when I finished them, and I did it without fear. That’s a good feeling.
It has been a tough few months, this week in particular was hard, but it has been such a comfort to hear from so many of you, your encouragements and offers of prayer mean so much. Thank you.