Monday, October 12, 2009


After much fighting and arguing with doctors. We had gone to Michigan State University ER yesterday, got a diagnoses of Pnuemonia. Told me to follow up with my Peds doctor today and that's exactly what we did.

Went to see the PEDS doc today and just came home. She finally got through to Children's Hospital, and our Doctor who said he just had Asthma. He still didn't believe her, but said if it'll make you happy we'll find him a bed by the end of the week and get him on some IV antibiotics. Before she could even get back into the room to tell me, the nurse was calling me to tell me that they'll have a bed for him tomorrow morning! Finally something is getting done. I feel horrible having to play this stupid game of pitting doctors against each other, but I needed to get this done for his own health and safety.

His Peditrican believes that he if doesn't have Psuedomonus, he's got an oral antibiotic resistant bacteria growing in his sinuses. I hate to put him on these, but nothing else is working. She's afraid if we wait too long it'll be too late. That's what I think too. I'm glad to have a doctor that I love somewhere in his care.

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!


He's had a cough for about 8 weeks now. His nose started out pink on the inside and the doctors blew me off. Well 2 weeks later he ended up having a runny nose. They started him on Omnicef and the symptoms went away while on the antibiotic. Well, about a week after the antibiotic was done the symptoms and bad cough came back again. They started him on Bactrim for another 10 days. The symptoms went away again and he was good. Now about a week and a half after the Bactrim the symptoms are back, but he also is have fevers on and off, complaining of stomach pain, vomiting, headaches, but no ear aches. I ended up taking him to the ER at Children's Hospital of Michigan last night. They couldn't get any meds or food down him. He had started vomiting about 6pm last night. Nothing would stay in him. They ended up sending him home anyways and said go to clinic in the morning.

So, against my better judgment I went home and went to clinic this morning. My CF doc told us that oh the vomiting is the flu, don't worry about it. Then told me that the cough he's been having is because of asthma that he now has. Which doesn't make any sense to me considering his cough lasts all day and night. Doesn't come with just doing things. He has it all the time. Asthma doesn't make sense to me. I just took the meds and went home. At this point I'm over tired and ready to cry because I know this isn't the problem with my son. He says it's asthma because his chest x-ray is clear and that his THROAT culture is clear. They have never done a lung culture, a sputum culture, or a sinus culture at any point. Just swabbing the back of his throat.

Well, I took my other kids to the peds doc because they haven't been feeling well. I told her how I felt about what happened at clinic today, and she checked him over. She's dealt with him more than the CF doc has. She says that the asthma diganoses is wrong. I agree with her. She said his nasal passages are as red as a Sharps Needle box they have at the doc office. She thinks that they aren't culturing the right thing. She thinks he might have PA in his sinus' and that he does need IV antibiotics to combat the crap that is beating him up. So, she's going to put a call into the CF doc on Monday morning and get him to see things her way and hopefully get the right answer. She's angry that he would just say he has asthma from a clear X-ray and push more meds.

NOW: The CF clinic is down to one doctor. They lost the other doctor to another hospital. I think since this other doctor has left, and all the Pulmonary and CF Clinic patients are just on him that he isn't as good as he used to be. I think my level of care is going down. I don't have the faith in him that I used to. Has anyone else had this problem? What do you do? The next closest CF Clinic is about 45 mins away, but they told me that he doesn't have CF (which he's had positive sweat tests). The next closest is 2 hours away. I don't know what to do at this point.

Thanks for letting me rant.