TestifyToLove
New member
Maybe I'm missing something here. When I have a problem, I assume my first step is to speak to the nurse, to see if its something she can handle or whether it needs to be referred to the doctor.
Is this not the purpose of a CF nurse? Because, its certainly the purpose of a nurse in any other doctor's office.
Everytime I talk to M's nurse, she gives me a run around. She gives me BS, inaccurate information that is not consistent to what his doctors have said nor what is consistent with his case and needs. Never once does she tell me she doesn't have his chart, she's not familiar with what's going on or that she needs to consult the doctor. She just pulls stuff out of her rear to justify incorrect information.
When we were getting ready for the hospital stay, she kept telling me M was being hospitalized so they could educate Dh and I about CF. This was NOT what Dh and I agreed to. Its not what the doctor discussed with us. She repeatedly said we'd meet with a social worker and a nutritionalist and they would check to see what was wrong with his G-tube. And, everytime I told her there was NOTHING wrong with his g-tube, she got condescending and rude to me.
Turned out, the hospital stay was what the doctor said and nothing of what the nurse kept insisting it was going to be. M never saw a social worker nor a nutritionalist. He saw doctors, had testing, evaluations and buttloads of antibiotics. He was never seen by a nutritionalist, nor by a social worker. And, not one doctor implied his g-tube had a problem. They all understood the g-tube is not being used and does not need to be used currently.
Then, this morning, I called the nurse because the meds were totally messed up. The resident specifically stated to Dh that he prescribed them as 'via g-tube' so that the pharmacy would dispense them in liquid form. Instead, we were given adult dose pills. Even the prevacid was given as a pill versus the solutab he's been on.
The nurse informs me there's nothing wrong with the meds. There's nothing wrong with asking M to swallow a dozen adult OTC vitamin pills, which are in doses significantly lower than what he needs. She informs me that the vitamins would have been prescribed based upon what his vitamin levels were in the hospital.
When I pointed out to her that his vitmain levels were critically low and his Liver doctor said he needed HIGHER levels of the vitamins, and that these pills cannot possiblly be bio-attainable for him, she informs me I'll have to discuss this with the doctor next time we see him.
I finally asked her to please let the doctor know I need to talk with him. I guess I'll deal with the PTT lab that home health wouldn't run with the doctor directly as well. And, I'm not sure *who* I'm supposed to speak to to find out what time Thursday to bring M into the clinic.
But, I'm completely confused here. Why can't the nurse check the chart, see what the doctors WANT on his meds. And, if necessary talk to the doctor. Call me back and see if we can't get this straightened out quickly. Give that his vitamin levels have been critically low since January and he's been essentially OFF vitamins for the last month because of repeated mistakes with the vitamin orders, I personally think its worth taking some effort to find out what is going on and get it fixed. Is this NOT the job of the clinic nurse to work with me and get these things straightened out?
If not, can someone explain to me what the role of the CF clinic nurse is if its not to liason and work with the patients and parents to manage their care?
Is this not the purpose of a CF nurse? Because, its certainly the purpose of a nurse in any other doctor's office.
Everytime I talk to M's nurse, she gives me a run around. She gives me BS, inaccurate information that is not consistent to what his doctors have said nor what is consistent with his case and needs. Never once does she tell me she doesn't have his chart, she's not familiar with what's going on or that she needs to consult the doctor. She just pulls stuff out of her rear to justify incorrect information.
When we were getting ready for the hospital stay, she kept telling me M was being hospitalized so they could educate Dh and I about CF. This was NOT what Dh and I agreed to. Its not what the doctor discussed with us. She repeatedly said we'd meet with a social worker and a nutritionalist and they would check to see what was wrong with his G-tube. And, everytime I told her there was NOTHING wrong with his g-tube, she got condescending and rude to me.
Turned out, the hospital stay was what the doctor said and nothing of what the nurse kept insisting it was going to be. M never saw a social worker nor a nutritionalist. He saw doctors, had testing, evaluations and buttloads of antibiotics. He was never seen by a nutritionalist, nor by a social worker. And, not one doctor implied his g-tube had a problem. They all understood the g-tube is not being used and does not need to be used currently.
Then, this morning, I called the nurse because the meds were totally messed up. The resident specifically stated to Dh that he prescribed them as 'via g-tube' so that the pharmacy would dispense them in liquid form. Instead, we were given adult dose pills. Even the prevacid was given as a pill versus the solutab he's been on.
The nurse informs me there's nothing wrong with the meds. There's nothing wrong with asking M to swallow a dozen adult OTC vitamin pills, which are in doses significantly lower than what he needs. She informs me that the vitamins would have been prescribed based upon what his vitamin levels were in the hospital.
When I pointed out to her that his vitmain levels were critically low and his Liver doctor said he needed HIGHER levels of the vitamins, and that these pills cannot possiblly be bio-attainable for him, she informs me I'll have to discuss this with the doctor next time we see him.
I finally asked her to please let the doctor know I need to talk with him. I guess I'll deal with the PTT lab that home health wouldn't run with the doctor directly as well. And, I'm not sure *who* I'm supposed to speak to to find out what time Thursday to bring M into the clinic.
But, I'm completely confused here. Why can't the nurse check the chart, see what the doctors WANT on his meds. And, if necessary talk to the doctor. Call me back and see if we can't get this straightened out quickly. Give that his vitamin levels have been critically low since January and he's been essentially OFF vitamins for the last month because of repeated mistakes with the vitamin orders, I personally think its worth taking some effort to find out what is going on and get it fixed. Is this NOT the job of the clinic nurse to work with me and get these things straightened out?
If not, can someone explain to me what the role of the CF clinic nurse is if its not to liason and work with the patients and parents to manage their care?