Latest post from Janet:
53 July 19, 2005 at 07:05 PM CDT
Well, our blood test is positive for the Heparin-induced thrombocytopenia (HIT). Dr. Charpie, the guy who is the guru here on that, said that it is extremely rare in children, so they do not routinely test for it when kids are on as many different drugs as Katie was on until they are weaned off many of them. Leave it to my Katie to always insist on being the exception to the rule......sigh! We have stopped her heparin. Her INR is only at 1.3, so we have had to start an alternative drug, called argantroban, which is not FDA approved in children. In fact, we agreed to participate in a study (sponsored by the company, of course) being conducted at several centers across the nation. So far, 10 children have been enrolled. Katie makes number 11. Why do we always have to be one of the first ones out on the ice??? sigh! Anyway, Dr. Charpie said that we had to do something and that is what he would have recommended even if we didn't want to participate in the study. And, after going through all of this, how could we not agree to participate if it will eventually help other parents whose kids like to be unique?
Our platelet count is at 60,000. Pre-op it was 220,000, so we are just a bit down. Norm actually is 250000, so we were a bit down to start with.
Other than that, Katie is doing pretty good. WE still have the arrythmia issues that have kind of taken a backburner for right now. They have switched her to oral amiodorone. In fact, as of this AM, we are only on IV for lipids, TPN, and the argantroban. The milrinone was DCed, as was the dopamine and digoxin, although we added oral captopril. Need to check on the last antibiotic - dunno if it is oral or not, but we will keep it until we lose the chest tubes, which are still draining quite a bit. But, we might even get to move to the floor tomorrow, depending on how this argantroban works out. We are doing frequent blood tests right now - every four hours - just to stay on the safe side and to see how Katie's body is handling it.
Needless to say, Katie is tired and a bit grumpy, but she is certainly entitled. This was our first full day off the morphine, and she seems to be handling it fairly well. She has more gas pain than anything else. When I had to leave just a little while ago at shift change, she started crying and said, "I want to leave this place. I want to go with you." Liked to broke my heart.
Oh, and we lost our foley today, too, to try and get Katie up more.
Y%'all must have gotten the word out - didn't see the fellow at all today. Dr. Bove did stop in this AM - see my e-mail did work. Hmmm...maybe that's why the fellow was MIA.
I am sure that I am forgetting tons of things, but for now things are relatively calm - just praying that this new drug does the trick and that Katie doesn't have an adverse reaction to it and that we can get back into sinus rhythm. I feel like an ogre when i call home and talk to Trip. He is bored to tears.........but what can I do? He would have been even more bored if he was sitting here in the hotel room all day...........
Thanks so much again for all of the info last night. Dr. Charpie was a little shocked when I knew all about argantroban as some of you had e-mailed that very link. Thank you, too, for your continued support and prayers. Much love. J.
