Friday, April 22, 2011


We started and ended this week at The Children's Hospital. We started the week with a cardiology appointment and EKG for Jacob's heart. His nurses had heard a heart murmur that Dr. E. wanted to have checked out immediately. Her urgency worried me, but also made sense for a medically complicated Mito kid.
Dr. E. called us as soon as the results of the EKG was back. She didn't spend much time on the heart murmur - she wants to hear it herself before speaking. She wondered if I had seen that the EKG was "borderline". Of course I had seen the big black letters at the end of the EKG strip, but after 5 years of diagnoses and test results I didn't want to jump to any conclusions despite me not liking the word "borderline". In Jacob's case it means that his heart's walls are thickening. Dr. E was concerned that this could mean a progression of Jacob's mitochondrial disorder, and that his heart muscle has weakened.
As Joakim and I both frantically started to google "thickening of heart walls", we found out that the diagnosis is "hypertrophic cardiomyopathy". It is a weakening of the heart muscle. As you go on reading, you find out that sudden cardiac arrest and death are identified risks. Big red alert on our comfy couch not being so comfortable anymore.
Dr. E. felt that we could wait a few weeks for her to first see Jacob, and then refer him to cardiology. I can see her point. This might not be a new development for Jacob. He hasn't had an EKG in 2 years, so it might have built over time. But as parents of Jacob, we can't sit back. We can't just wait for something to happen.
So, I called cardiology first thing the next morning, and we got an appointment on Monday morning for a cardiology work-up, and an echo to further analyze Jacob's heart.
As we saw Dr. C. today, she was very happy to hear that Jacob will be checked up on Monday. She did say that the only symptoms she can see in Jacob is that he is "puffy", which could be a sign of built up fluid. She did check his latest chest x-ray, and said that there is no sign of an enlarged heart or built up fluid in his lungs, which are both good signs.
Having been living with Mitochondrial disorder through Jacob for the last 5 years, I know that once again no one knows. We can only try to find out as much as possible, and see what we can do for Jacob's heart, so it doesn't have to work extra hard. do need your heart....because it is very important to us all loving Jacob....
Love, Maria.
And yes, Happy Easter!

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