Thursday, December 22, 2011

One year ago

One year ago today, December 21st 2010 was the beginning of Jagger health problem, but at that time, we really did not know how bad everything was going to get throughout the year.
During a visit to the ped a few days earlier, we were told Jagger has a heart murmur but that is pretty common for babies, so not to worry about it, but we can get it check at the heart clinic if we want.
So just to be on the safe side, we made an appointment to the Sibley heart center. we went to the clinic  and they did an EKG, which show some abnormal results, so they decied to to an echocardiogram.
This lasted forever as Jagger was moving a lot.
After a few minutes wait, one of the doctor came by and told us something was wrong with Jagger heart. Of course it was a huge shock to us as he never had any symptoms (turning blue, sweating when eating, difficulty breathing, etc). We were told he has an enlarged heart and we should drive to the Special heart clinic that meets on Monday. Fortunately that clinic was closer to our home, however we were told to go there right away and not go home first. The urgency of the situation seemed a little strange so we only stop to grab a quick lunch and went to the clinic.
That is went the madness started. We were only in the clinic for 5 minutes when Dr. S. (Cardio) told us that Jagger has Hypertrophic Cardiomyopathy (HCM) which is an enlarged heart (left ventricular wall in his case), it is a very severe condition that affect his heart function and they admitted us to the cardiac unit at the Children Hospital.
Of course, we were shock beyond believe. 3 hours earlier we went in to check a "normal" heart murmur and now we were in the cardiac unit.
In the cardiac unit everythign has a sense of urgency and Jagger had cables hooked up all over him with doctors and nurses coming in and out every few minutes.
We saw several doctors and no one seems to know why that was happening, we talked to a genetic counselor that asked a ton of questions about our families to see if anyone has HCM since it is usually inherited. So we called our families in France and Germany to make sure but of course no one had it or died from a heart condition, so it was a total mystery.
The doctors were really worrying about Pompe disease, so they took a lot of bloods to do genetic testing. they said it usually takes 3 to 4 days to get Pompe results but they will put a rush on it and we should have the results before Christmas. We were also told not to look up Pompe on the internet, which of course we did and saw how devastating that disease was. I already knew some of it as a few weeks earlier I saw the movie" Extraordinary Measures" in a plane. So we were really hoping it was not Pompe, now we know it is actuality worst that Pompe but at that time we were just stressing out like crazy waiting on the results.
We also did not know if we would spend Jagger first Christmas in the hospital or not.
After one night in the cardiac unit, they saw that his heart function was not getting worst and he was not showing symptoms so they sent us home as they were nothing they could do until we get some of the genetic test results back. But we still did not have the Pompe results. We actually had to wait until the 24th in the morning to find out that Pompe test was negative.
So on the 25th, we sat at home, not really sure what had just hit us and just wonder if that would be Jagger first and only Christmas or not. Life has just change forever in a heartbeat.!

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