Saturday, August 15, 2009

Another full day....

We got a late start this morning, believing we were on the upswing with Ty's hemoglobin levels. I enjoyed sleeping in and having Lauren's pancakes before heading to Floyd Memorial for lab work. They were backed up and their machine was not functioning properly so it was 12:30 before we discovered Ty's level dropped off again to 7.5. I was so disappointed that I literally cried in front of the poor lab tech that delivered the news. We headed to Kosair for Ty's third transfusion. It went more smoothly than the last two but we didn't get home until just before midnight again. It just makes for a very long day. Poor little Ty knows that every time the door to our room at the hospital opens he's going to be picked on so he fusses. Otherwise, he just sleeps through it all. The doctor we worked with today (who issued orders completely different than the previous two doctors ordered) indicated to us that they can suddenly drop levels up to three months into treatment. That was not the news we wanted to hear, but at least we won't get our hopes up too much with the next improvement.

I ran into my OB/GYN at the hospital and had time while we waited on Ty's lab results to discuss his condition. She shared with me that she screened my blood when I was in the hospital for preterm labor and the anti c antigen test was still negative at that point, 30 weeks. So, they tested me three times before I was admitted for labor. She saw the results from that test and called the pediatrician to warn her to watch Ty because the antibody levels were "sky high". Greg and I believed the doctor had dropped the ball, when in reality, they did all they could. She is contacting the high risk specialist to inquire if something more could be done in case they run across this in another patient.

Ty's weight concerns were also laid to rest today. The doctor's office on Wednesday incorrectly converted the kg to lbs. Ty weighed an impressive 9lbs 7ounces today! With the correct conversion, he really weighed 9lbs 1ounce on Wednesday. I had doubled his formula supplement because I was told he hadn't gained weight in over a week! So, he's going to be grumpy, but his supplements will be weaned back again!

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