Update: Jasons appointment yesterday went well. He got his INR tested, and he didnt even cry. His level was a tad bit high but they were not worried about it. He had an echo and stayed still the entire time, even in uncomfortable positions he laid still. The echo tech was surprised at how well he did. All I thought to myself was Well duh this is nothing compared to what he has been through. Dr.Y looked over his echo with Jason and was explaining what everything was in the images. Jason sat on his lap listening like he knew exactly what he was talking about. It was the cutest thing! The final conclusion was that his heart function is still basically the same, Maybe a little bit better but they would still classify it as moderate-severe heart failure. As of now Jason is tolerating it well and the plan is for him to keep his heart for as long as he can manage with it. Heart transplant is just trading one disease for another. We will continue to monitor him very closely along the way but we are going to continue to do what we are doing with all the medication and close monitoring. As for these blue/cold spells that he has been having, the doctors really dont have an answer for that either. As long as it comes and goes, there isnt anything they will do about it. His prominent veins they say are from his Glen having such a high pressure, again there isnt much they can do about it as of now. I really wanted to come out of there yesterday with a plan but the fact of the matter is, we will never be able to have a set in stone plan. CHD is so unpredictable that plans are void. Every diagnosis, child and situation are different and there is no paved road for the road we are on. Jason is paving the road as we go. So we continue to wait and enjoy each and every day we have with him by our side. We will live life to the fullest and not take a single thing for granted. I am thankful that his heart function is not worse and is providing Jason with what he needs for the time being. I am thankful that we werent admitted for any reason and that we have managed to stay out of the hospital so far during this torturous flu/sick season. I am thankful that my son is gaining weight and striving although his tough circumstances. I am thankful for the kid he has become so loving, smart, caring and ambitious. There IS SO MUCH TO BE THANKFUL FOR. God is working miracles with Jason and this is just one more part to our story. We have another appointment in 6 weeks until then.... WE LIVE!!!!! Thank you for all the love and support! Heart
Posted on: Tue, 06 Jan 2015 20:13:01 +0000
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