I totally agree with all of you. I am mom first absolutely...If something unusual came up what would we do? Likely go to the CF clinic we've gone to in the past 5 more hours away.
I should clarify, when Maggie had a PICC we had a home care company/nurse come in...They did do the dressing changes. I am a huge control freak and comfortable with PICC line at the time so maintenance of it myself made me more comfortable, less germs coming in the home etc. There was a CF nurse at clinic during this time period, the home care company was the one who set up the stuff for IV's.
The bottom line is the finances at the hospital. This is concerning. I doubt they will replace the RN position because I bet it was a cost cutting measure. However if it affects the CFF accrecdiation is it worth it? I trust our CF doc, love our nutritionist. They are my main go to people. I should look into setting up a Parent advisory board..If only there were 48 hours in one day.
I should clarify, when Maggie had a PICC we had a home care company/nurse come in...They did do the dressing changes. I am a huge control freak and comfortable with PICC line at the time so maintenance of it myself made me more comfortable, less germs coming in the home etc. There was a CF nurse at clinic during this time period, the home care company was the one who set up the stuff for IV's.
The bottom line is the finances at the hospital. This is concerning. I doubt they will replace the RN position because I bet it was a cost cutting measure. However if it affects the CFF accrecdiation is it worth it? I trust our CF doc, love our nutritionist. They are my main go to people. I should look into setting up a Parent advisory board..If only there were 48 hours in one day.