Rough day with Brooke...woke up with a new skin infection that is raised around the edges. That's new! Took 6 pictures of it and sent them to Albq. To make a really long and tiring story short: I took Brooke in to have a blood culture done at noon which will take at least two days to grow, started her on antibiotic and she's had high fever on and off all day. The spot on her leg has grown to about 4 inches by 4 inches and looks worse now than it did this morning. It's hard to keep heat on it when she has 102 fever! My mom is here to help - thank goodness. Poor Mike is at school in Albq. I feel for him because I know he wants to be here with us. Right now we're trying to stay out of the ER. If this fever doesn't go down - we'll have no choice but to go. Please pray for Brooke!
Another special prayer request is for our doctors. We are having signigicant issues getting our doctors to move on anything. Not sure why healthcare at the hospital has gotten to this point, but it's putting Brooke in jeopardy. We don't feel time is on our side with some of the things we have going on yet I can't seem to make any progress in getting resolution. I've been on the phone with two doctor's, two nurses, receptionists and insurance all day long and have gotten nowhere. I'm pretty much being forced to evaluate whether switching our insurance providers will solve the problem. I'll do whatever it takes to get the coverage Brooke deserves. So frustrating! Pray for guidance for us as we move forward and for Brooke to get care. ANY care at this point would be better than what we're getting.
The trip to Denver was nice. Brooke did great. We saw an Immunologist and a Cardiologist. Both were nice and very knowledgeable. The Immunologist said the Neutropenia is caused by Brooke's spleen holding the Neutrophils hostage. If he removed the spleen - she would be cured of it. BUT...you don't want to remove a spleen on a person with Brooke's problems. Scratch that one! He suggested low grade antibiotics all the time to help with skin infections. He also is running a bunch of blood work looking into why her IgM level is so high. The Cardiologist did an EKG and told us he was 90% certain she has a heart infection. He tied the skin infections to the "tumor or clot" she has in her heart. He said it is most likely infection and that she needs to be on high-powered antibiotics for 6-8 weeks intraveneously.(OUCH!)Oddly enough, he is friends with our pediatric cardiologist in Albq. Small world! And the Immunologist in Denver trained our Immunologist in Albq. Hmmmmm....If only our Albq. doctors moved at the same pace the Denver ones do!
That's all for now. I'm pooped! Going to go hold my baby and pray this fever away!
No comments:
Post a Comment