At our February appointment our metabolic doctor heard a murmur in her heart and she ordered for an Echo the week after. We were for some reason very confident that she is totally fine. But the shock was waiting for us. On Feb 16, she had an Echo and was diagnosed with Hyper tropic Cardio Myopathy. It is a abnormal thickening of heart muscles. Because of that her heart has to work harder to pump blood. We were so depressed and helpless. Everything was blurry and we were just lost. They wanted Mahiya to be admitted for couple of days to get a baseline.We did not know what to do with our older daughter. We had no family here. So we let her in our friend place. It was the first time she was away from me and it was so hard on her. But I am very grateful to the friend who took care of Mithilya for 4 days.
It was the time when we were kind of getting used to live with UCD, this shook us again. We had to build up our confidence again, which was not easy. In the hospital, Mahiya was started on meds to reduce her blood pressure. For now they are just monitoring her. There is not much answers like what caused it , when did it start, is it from birth..... ??????
When in hospital, she was having running nose and cough and her ammonia went up to 90, but she was started on D 10 immediately and ammonia was in control in 24 hours. Then we got home after 4 days. We realized that it is not possible to live here (US) without family support and my in-laws accepted to come from India and help us out.
Life goes on......
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