Thursday, January 15, 2009

January visit to Childrens

We just got back from a monthly trip to Boston. Emily had a blood test, electrocardiogram, echocardiogram, a chest x-ray, and a visit with Dr. Blume and Jodi Elder on the transplant team.

Emily's heart function has taken another nose-dive. Her heart is even more enlarged, and her ejection fraction is down to 20%. That's the percentage of the left ventricular volume that is discharged on each pump. 50-60-% is normal. Last year she was at 45%; she was at 35% in October, so the additional drop is a sign that the decision to list her last month was correct.

She has picked up a cough the last week, and it is related to the heart failure. Her left ventricle is not pumping as much as it should, so the fluid backs up into her lungs. The plan is now to admit her to the hospital next month to put her on a drug called Milrinone. This drug will relax the heart muscle and improve its function, but it must be administered IV in the hospital. There is some risk of cardiac arrhythmia when they first start, so she'll have to spend the first day or two in intensive care. After that it will be just a boring few days. They expect to release her after five days and she will be much better for a while, but the symptoms will come back and hospitalization will be required again.

As explained in a previous entry, while she's in the hospital she moves to the top of the transplant list, so one of these hospital visits is likely to end with transplant surgery. In the meantime, it's back to "normal" for us.

We also want to thank everybody for writing to Blue Cross Blue Shield about their contract negotiations with Tufts. Dr. Maron called us and thanked us, which means a lot to us. Maybe the corporate moguls are listening too.

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