Saturday, January 29, 2011

Day by Day

We are settling into the idea that JJ's heart is much more significantly damaged than we thought. Of course we are still a little distant from it and that seems to be the only way to still do all the things we need to do everyday. Being overly traumatized and saddened at this point doesn't help anything. We are just upset enough to be seeking all the answers and information we can. I research and read as if it were someone else I was concerned for. Jerry is so constantly funny that he makes it easy to focus on other things in our day to day life. One of the biggest comforts I have is the CCF list serve. All parents of kids with heart disease who vent, and offer support and information to each other. Truly, these people know what we are going through. Right now we just need prayers for finding the answers we need, prayers for the doctors to recognize what steps to take, and for Jerry to avoid as many viruses as possible. My instincts are telling me Jerry is good for now. I don't think that he will be in critical shape with his heart in the next few years. So we just take each day as it comes.

I wrote all that last week and never got back to finish it. Today I am waiting for a call from Dr. Towbin. He is the guru for pediatric cardiomyopathy. He runs the program in Cincinnati Childrens Hospital and will sometimes offer to talk to parents about their children on the phone or work with them and their area doctors. I wrote an email to him about JJ and he wrote back that he would talk to me on the phone. He thought he could call today so I hope he does. I am so worried about the kids interrupting me when I am talking with him. I may have to just lock them in the closet. Just kidding in case anyone is coming to their rescue.

A worrisome incident last week when there was a mix up and Jerry did not get his evening dose of heart medicine. He seemed OK except for a little trouble with heavy breathing in the am when waking. He does this sometimes in the am but it seemed a little more than usual. Then he was fine until we went to meet John at Pizza Hut for dinner. Getting out of the car he said he was sick and looked really pale. He just wanted to go home and was laying on me and mentioned that his belly hurt. I thought he was falling asleep on me and then he made some sounds that sent us to the bathroom he was very out of it and threw up a little...like trickled out as he hung his head. Very strange. John came and I took him home. We both thought he looked a little blue in the area around his mouth but he has had this before and docs have said it is OK. He laid on me at home for a little bit and then seemed fine ever since. I gave him that evening dose of heart med a little early. It is a question if that was his heart but it is good that he recouped quick from whatever it was. pics this weekend for sure!

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