Sunday, October 11, 2009

Update on Horrible CF Care

After much helpful advice from all of you wonderful parents, I did what my heart led me to do. I drove 2 hours one way to another ER. I was so worried when the "asthma" meds he was put on only made his cough worse. He was still running fevers. I ended up at Sparrow Hospital in Lansing Michigan. I drove the 2 hours there and people were wondering why. After all the background information and talking with some very good doctors (who didn't even work for pulmonary) we found out what is really kicking my poor child's butt. He has a freaking...get this...PNEUMONIA!!!!!!!!!!!!!!!!

We're on Zpak now and will be for 5 days. We'll see if this gets rid of it. If it doesn't, we'll be on IV antibiotics. Which at this point is fine with me. I'm going to be calling the CF Center in Lansing in the morning and seeing if I can get into their clinic to see a doctor immediately. I don't mind the drive. I know how to get there now. I also will be doing, on the advice of a few people on the boards, reporting my son's old CF doctor to: Children's Hospital, Medicaid, Children's Special Healthcare, the BBB and most importantly the CF foundation. I'm done and I've had it. This man almost cost my son his life. I just found out I had a Great Aunt who has CF and died at the age of 22. I'm not losing my son early because of shotty care. It's not happening to me! Thank you all for your support. I'll let you know how the reporting goes tomorrow!