T
tammykrumrey
Guest
Okay, I am on a roll! Here is my problem...
Now that Kayla has Cepacia, we can no longer attend CF clinic on 'normal' CF days...not a problem, I completely understand. But here is the issue-on Fridays when we go to clinic, we only see our CF dr and the nurse. No PT, no dietician, no anyone else. It's kind of like they forgot us.
Don't get me wrong-I love the girls CF dr! He is, in my opinion, one of the best there is. But sometimes I wonder if some details get missed that would be looked over with others on the CF team-had they actually been there to talk with us.
For instance-Hannah has slowly been dropping on the scale for her weight. In April of 08 (almost one year ago) she weighed 59 pounds putting her at right below the 50%. She dropped down to 57 pounds in November 08, putting her at the 25%. Two weeks ago when we attended clinic she weighed 58 pounds, putting her at the 18%!!
For reference, we have been seen on non CF clinic days since the November 08 appt.
So, when do I start to get concerned? I mentioned this to the CF nurse yesterday when I called about the girls needing to be put on antibiotics and she didn't sound overly concerned with it b/c Hannah's obviously fighting an infection of some sort. Our regular CF nurse is on maternity leave and this nurse doesn't really know Kayla and Hannah as well. They are also short-handed with the other nurse out.
So, anyways...any suggestions as to when should I get concerned? Or should I just keep stuffing the kid as much as I can<img src="i/expressions/face-icon-small-smile.gif" border="0">
Now that Kayla has Cepacia, we can no longer attend CF clinic on 'normal' CF days...not a problem, I completely understand. But here is the issue-on Fridays when we go to clinic, we only see our CF dr and the nurse. No PT, no dietician, no anyone else. It's kind of like they forgot us.
Don't get me wrong-I love the girls CF dr! He is, in my opinion, one of the best there is. But sometimes I wonder if some details get missed that would be looked over with others on the CF team-had they actually been there to talk with us.
For instance-Hannah has slowly been dropping on the scale for her weight. In April of 08 (almost one year ago) she weighed 59 pounds putting her at right below the 50%. She dropped down to 57 pounds in November 08, putting her at the 25%. Two weeks ago when we attended clinic she weighed 58 pounds, putting her at the 18%!!
For reference, we have been seen on non CF clinic days since the November 08 appt.
So, when do I start to get concerned? I mentioned this to the CF nurse yesterday when I called about the girls needing to be put on antibiotics and she didn't sound overly concerned with it b/c Hannah's obviously fighting an infection of some sort. Our regular CF nurse is on maternity leave and this nurse doesn't really know Kayla and Hannah as well. They are also short-handed with the other nurse out.
So, anyways...any suggestions as to when should I get concerned? Or should I just keep stuffing the kid as much as I can<img src="i/expressions/face-icon-small-smile.gif" border="0">