So yesterday and today have been spent at PCMC for Ethan's end of study visit for the enalapril study he was in. Yesterday was the echo. The cardiologist does not think that the vomiting is related to his heart. However, the only thing he could say about his heart function is that it is "OK". I've pressed him a couple of times as to what that really means. He basically said that some doctors might say it didn't look very good and that others would agree with him that it is "OK". He said that it didn't look "bad" but he wished it looked better. I have to admit that I was a little bummed about the results. Ethan has been doing really well lately and so I guess I was hoping for at least a "good" echo. But I guess "OK" is better than "bad". He said that we will probably do another echo in about 6 months to see how he is doing.
Ethan also had his developmental testing today and we should be contacted either later today or early next week with those results. I don't think there should be any surprises with those results. I think he is fairly average in most things.
So now that Ethan is no longer in the study, the cardiologist wants to put him on enalapril for real (he may have already been on it but we won't know until the study is over in a couple of months). So we will start this in the morning and check his pressures at our pediatrician's office. Then we have to take him back to PCMC next week for anthother blood pressure check and possible dose adjustment and lab work.
So to summarize the last couple of days I would say that they have been "OK". Hopefully with these medication adjustments we can get some better news next time around.
---Allison
Friday, June 13, 2008
Echo Results
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6 comments:
OH... I feel you!! We hear the "OK" function all the time. It was "POOR" at first and I just didn't understand..."what does that mean?" Since the Glenn, we hear "improvment and just ok".
Ethan looks great and it sounds like he's a happy little man. Don't worry too much about it! Maybe in six more months you'll hear "it's better than ok!"
Andrea
Yeah, I wouldn't like to hear "OK" either, it would make me nervous, BUT, he does look and act good. Hopefully it will stay at OK or move up a few notches to GOOD. How nerve wracking...My kids STILL pray for him EVERY single night and I don't see that stopping anytime soon.
It is good to hear about Ethan. Sometimes, we have to look at the kid and forget about the tests. Don't you remember that from nursing school???? He-He! It is so easy to say when you are talking about a patient as opposed to your child. We worry and worry and many times they surprise us and we wonder why we were so anxious to begin with! He is a tough little boy cause he has such a great momma! Love and miss ya, Jody
Hang in there... You are strong and that is important. We will keep you and your family in our prayers.
Well, I am glad the anticipation of the echo is behind you, but I wish the results were more reassuring. I think the single hardest part of being an HLHS mom is all the uncertainty.
Abby has been on Enalipril for a couple of months now, and with every echo since her cardiologist says, "WOW! She is lovin' this stuff!" and that her Tricuspid valve is a lot less leaky as a result of the medication. I hope it can help Ethan improve from just OK to Outstanding!!
We're thinking of you guys! Drop an email if you need to talk.
Hello, thanks for posting this
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