Study Visit

Ethan, Gavin, and myself just got back from PCMC for one of Ethan's follow up visits for the study drug (enalapril) that he is on. It was an easy appointment (no lab draws or x-rays) which is why I even attempted to take Gavin along.

They took his blood pressure which was a little high for him (114/60). It could be high simply because he's outgrown his dose. The study nurse will call us tonight after shes given the cardiologist all of his new statistics and let us know if we need to increase any of his blood pressure medications. One other thing is that his sats were only 83% on room air. We don't have to have him on oxygen unless his percentages drop below 80% but when he is at home he usually sats between 87-89%. I haven't monitored him in a while since he has been doing so good. But, when he wakes up I am going to check his oxygen levels on our monitor and see if it makes a difference or not. Also, at this appointment he weighed 19lbs 5oz and was 28.5 inches long.

*Update- His oxygen levels were 88% on our monitor at home*

I take him in tomorrow to get his last synagis (RSV) shot. I am curious to see how much he weighs on their scale. When he got his last shot (4 weeks ago) he weighed 19lbs 3oz. I am hoping that he is gaining more that a couple of ounces in a month. If he really hasn't gained much weight, it could be because he is becoming more physically active. He has been crawling around now for a couple of weeks and easily pulls himself up on anything. So it may be that he is simply burning more calories. I hope that's the case anyway. I hate to think of the alternative which is that is heart is starting to lose function. There are also times in the last couple of weeks where he will breath heavier and faster. He is not in any distress, but he just seems to be winded at times. I mentioned it to the study nurse today and she said not to worry, that it was probably due to him exerting himself more. Regardless, it is something I will definitely keep an eye on.

As part of the drug study that he is in, there will be another sedated echo when he is 14months old as well as a full developmental testing. I will be anxious to see what the results are. I am hoping that his tricuspid valve is doing OK and that his heart function is still looking good. I guess until then, we will just watch and wait. I hate waiting. When anything is even a little off, my mind starts to wander and I just want to know that everything is OK. Overall, his appointment today was fine, it just bugs me that his pressures are up and that he is not gaining much weight (and that his sats are lower than usual but I will double check this before I get too concerned). Both of these things can be explained and fixed but I just want to make sure that nothing is missed and these aren't pieces of a bigger picture. I guess the moral of this story is that you can't get great news all of the time.

I don't want to sound paranoid. He really is doing great for what he has to deal with. I just want to make sure that nothing goes unchecked. Thanks for all of you out there. We appreciate all of the love and support.

---Allison