Wednesday, November 07, 2007
Overdue Update Current mood: tired
Hey ya'll sorry it has taken so long to update. The wi-fi at the hospital has been down since last week and the stupid Ronald McDonald House has the myspace site blocked.......grrrrrrrrr.
Well, obviously we are not at home. Macy Jane's white blood cell count was still 21,000 after a week's worth of antibiotics so they were trying to figure out where the infection was. Turns out, her incision in the center of her chest is infected pretty bad. It is doing better, but there is a long way to go. The area is about 3 and 1/2 centimeters long and a centimeter wide and it is as deep as the head of a q-tip.......you used to be able to see bone when you looked in to it. We are doing wet-to-dry dressing changes on it and it is slowly looking better. Tonight the PA for surgery is coming by to take a razor to the wound bed and remove all of the white fibrinous tissue that is blocking the healthy tissue growth.....I dread that. In good news though, she is on another 10 day course of antibiotics (they are done in a few days) and her numbers seem to be coming down slowly. We will be able to come home once her incision heals a little more and her numbers return to normal and STAY there without antibiotics. Maybe 2 2 weeks or less? Who knows.....I don't have a goal date anymore.
The other issue that we have been dealing with is her throwing up. She goes in a cycle where she throws up for 1-2 days off and on and then she will go a few days without throwing up. They consulted GI doctors and everything they suggested we unfortunately had to tell them that it had either been done already or it didn't work. They did a gastric emptying study yesterday and she passed that so she empties her stomach in a normal time. Noone knows why she throws up. The cardiologist that is on this week doesn't care that she throws up as long as she gains weight.....the problem was that she started to lose 1-2 ounces a day. However, she is back on track and gaining weight. They changed her formula to something called Elecare (super expensive) and it is supposed to be super easy to digest. We will see. She has an unbelievable amount of gas. One night I pulled 100ml out of her stomach after she was fed. No wonder she throws up and that is even with Mylicon on board. We have started to be more diligent about checking for air and left over food in her tummy. In other news....she took 3 or 4 tiny bites of applesauce yesterday and she also laughed yesterday!!!
Well, the nurse let me borrow her computer to use the internet since people have been texting me to see how she was. I don't know how long it will be before I can update again. They are supposed to be fixing the wi-fi this week. I hope everyone is doing well
Much Love
Bethany