Not Much More to Report

We saw the pediatric cardiologist here in town again today. The bloodwork that is back from Friday all looks good -- liver function is good, electrolytes are good, blood count is good, etc. The metabolic tests aren't due back until Wednesday or Thursday, as it turns out. Annie is down a bit in weight over the weekend, but that was expected since she started taking Lasix (a diuretic) on Friday night. The doctor said three different times that Annie "looks like a million bucks" and that is worth something. He assured us she is not a time bomb, but did say that she has deteriorated significantly since she was born and said that if she continued to deteriorate at that rate "clearly she would be on the transplant list in three months." Not a nice thing to hear.

We have opted to admit Annie to Children's Hospital tomorrow morning where we can meet with the cardiomyopathy team, continue running blood tests, and try, try, try to get some answers. I think the length of her stay in the hospital will be dependent upon whether or not they decide to do a cardiac catheterization. The cath, we learned today, would let them confirm that Annie's coronary arteries are structurally normal. Cardiomyopathy can be caused by a misplaced coronary artery (coming off the pulmonary side, if I remember the doc's description correctly), but Dr. Johnson believes he got a good look in the echo and that they're fine. Still, he said, they will make the call in Boston as to whether or not they think the echo is giving them a good enough look. No matter what, we're just hoping to get some more solid answers starting tomorrow. Thank goodness for Children's Hospital! We are incredibly lucky to live just an hour away from all of the world-class specialists there.

We have talked about Annie's prognosis in generalities only. Cardiomyopathy in children is very complex and most cases (some reports say 79%) are never linked to a distinct cause. Dr. Johnson said we could generally think in terms of thirds. One third of children recover, one third of children are managed through medication or other medical interventions including transplant, and one third of children do not make it. That's the best we have right now until we get more tests and rule out some of the scarier metabolic disorders (for which transplant is not an option as the disorder would only sicken the transplanted heart as well).

Meanwhile, I'm faced with leaving Jamie for a few days at the very least. Scott would more than likely bring her down to visit Wednesday afternoon but it is New England and it is February ... our first significant snowfall of the year is due to start tomorrow night and stick around through Wednesday night. I might be on my own for awhile at the hospital! So, I'm trying to cope with being away from Jamie for the longest time ever at the same time I'm so worried about Annie I don't know whether to cry or scream. I know Jamie will be fine -- my mother flew in Saturday night so she could be here for Jamie and for us and Scott will be here at night, but it's still another layer to everything that's going on.

I have once again been humbled by the outpouring of support and comfort. Thank you, everyone, for all of your e-mails, posts, and phone calls. We feel surrounded by your support and by your hopes for our girl. If we took everyone up on their offers, Jamie would have playdates morning, noon, and night for the next few weeks. Thank you! We have been and continue to be well fed by all of the wonderful cooks we know, too. It is a load off my mind to think that Mom won't have to worry about every meal for herself, Scott, and Jamie while I'm gone. (Jamie is enough of a handful ... that's why I don't get a meal on the table every night. That's my story and I'm sticking to it!) Really, there are no words to express our gratitude. Thank you.

I'm off to pack and get us ready for the next step ....
Ross