I've posted before on this site about how we get concerned with the local care our son receives. When he was born, we were fortunate that he had a bowel obstruction and had to be lifeflighted to a children's hospital in the city that is an accredited facility. During our 4 week stay we got to learn about cf, cpt, medications, etc. got to know members of the CF team, found a wonderful doctor. We've always been concerned about the care we receive at home. Orginally we were happy to hear that they had a CF team, CF clinic, but after attending a few times and comparing it to the facility in the city in terms, we became even more concerned -- community waiting room, more reactive that proactive -- won't go into details since I've said it all before...
Yesterday at the CF walk, my MIL, who is a nurse stayed behind to help and was suprised to see one of her former nursing students at the walk. Her son was one of the most recent newborns diagnosed from the newborn screening that our state started in January. The mom indicated that after reading the article about our family in the paper and the care we give DS -- CPT 3-4 times a day, nebs, etc. she became concerned about the lack of care they were receiving -- contacted the local respiratory care facility and asked that they teach her how to do CPT. They still don't do nebs. She asked my MIL and the CFF rep and a CFer from the City if maybe she should check out the CF center at U of MN. My MIL told her she needed to be more proactive in care for her son. Another new parent said that her son cultured staph in February, but the doctors at the local CF clinic said not to worry about it. They'll deal with it in JUNE!!! when she goes to CF clinic. They do CPT, but also no nebs. And just enzymes for meds.
Add to this the $790 bill we got for outpatient care at our last local CF clinic -- that doesn't include the $189 for each doctor (3), xrays, labs, dietician.... This was a 4 hour long appointment in which 2-3 hours was spent in an exam room. Money isn't really an issue when it comes to keeping our son healthy. But with our concerns about the local clinic, what we've just heard from two new parents -- we're ready to bail out of the local CF clinic. Originally we thought it was important to develop a rapport with the local "CF" doctors. But now we're torn.
We could continue to go to his peds doctor who is part of the CF team, we could try to find a new doctor within the same clinic system or there's another hospital/clinic facility in town and I've heard one of the primary care doctors in Family Practice has two sons wcf. We still go to our CF doctor in the City, but we need to have a local physician, since it's not feasible to run to Minneapolis (3 1/2 hour drive) for every little childhood illness.
We're thinking long an hard about this, just weighing our options. Tomorrow I have a regular appointment with my GYN and think I'll mention my concerns to him and see if he has some suggestions or can refer us to someone else.
Liza
Yesterday at the CF walk, my MIL, who is a nurse stayed behind to help and was suprised to see one of her former nursing students at the walk. Her son was one of the most recent newborns diagnosed from the newborn screening that our state started in January. The mom indicated that after reading the article about our family in the paper and the care we give DS -- CPT 3-4 times a day, nebs, etc. she became concerned about the lack of care they were receiving -- contacted the local respiratory care facility and asked that they teach her how to do CPT. They still don't do nebs. She asked my MIL and the CFF rep and a CFer from the City if maybe she should check out the CF center at U of MN. My MIL told her she needed to be more proactive in care for her son. Another new parent said that her son cultured staph in February, but the doctors at the local CF clinic said not to worry about it. They'll deal with it in JUNE!!! when she goes to CF clinic. They do CPT, but also no nebs. And just enzymes for meds.
Add to this the $790 bill we got for outpatient care at our last local CF clinic -- that doesn't include the $189 for each doctor (3), xrays, labs, dietician.... This was a 4 hour long appointment in which 2-3 hours was spent in an exam room. Money isn't really an issue when it comes to keeping our son healthy. But with our concerns about the local clinic, what we've just heard from two new parents -- we're ready to bail out of the local CF clinic. Originally we thought it was important to develop a rapport with the local "CF" doctors. But now we're torn.
We could continue to go to his peds doctor who is part of the CF team, we could try to find a new doctor within the same clinic system or there's another hospital/clinic facility in town and I've heard one of the primary care doctors in Family Practice has two sons wcf. We still go to our CF doctor in the City, but we need to have a local physician, since it's not feasible to run to Minneapolis (3 1/2 hour drive) for every little childhood illness.
We're thinking long an hard about this, just weighing our options. Tomorrow I have a regular appointment with my GYN and think I'll mention my concerns to him and see if he has some suggestions or can refer us to someone else.
Liza