After almost a full day of being at Children's we are not much closer to any answers. The problems appear to be the same - concern over maintaining a regular rhythm, reducing the fluid in his chest and improving the squeeze on his left ventricle. There was a lot of back and forth today regarding what exactly to do with not a whole lot getting accomplished. The end result, more than anything, was that Tim didn't get to eat for the majority of the day today.
Based on the x-rays and echo that were done today there is definitely some fluid that has collected that they are trying to treat with diuretics. The echo also shows that there is not ideal, although we already knew that. The doctors here seem much more concerned about it than we are based on what we were told in Michigan, and we have strongly urged the doctors here to review the studies done at U of M so they are comparing apples to apples. They did confer with one of the doctors from U of M and are planning on talking with Dr. Bove as well.
Right now, other than pushing some medications to assist with the squeeze, regulate his rhythm and dry him out not a lot is going on other than observation. The doctors aren't sure about what they are going to do, or how long it will take to make a decision. We did have a chance to talk with Dr. Vitullo today who told us it was too soon to be either pessimistic or optimistic about anything but assured us that it was the best thing to do by bringing Tim in when we heard his irregular breathing.
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