Going in - and a Litte Ticked Off

[jayotto]

So.......

My daughter, Emily 9 y/o w/CF, is being admitted today. She started having a wet cough and we had a GI appointment at TCH, so afterwards I went downstairs to Pulmonary so her nurse could listen to it. Her doctor just happend to be back in the office (she was out of the country for 1 month), and really let us have it. Emily has not gained any weight during the last 9 months. She has a G-button that we use occasionally because after 2 nights of feeds, she has the worse stomach pains and I can't bear to see her in pain. Yes, I know Emily is thin - but my other daughter without CF is thin too. She is also really tall and bigger than the other CFers at her school. The other doctors seem to think she looks okay.

Here is the kicker ---- The doctor informed me yesterday, that Emiy cultured Staph on her last visit. This was 3 months ago! Why am I just hearing about this now? I always ask them to give me the culture resuts, and now that I think about it, they never give them to me - except to say that she cultured her regular psuedemonas again.

We have been going to this doctor ever since Emiy was diagnosed at birth - but I am getting so frustrated!

So - we are mainly going in for weight, but I am assuming she will also be on antibiotics. Keep your fingers crossed that we are out by September 17 - this is her 10th Birthday - and I think she is tired of spending every holiday in the hospital - we were in at X-mas last year too!

Frustrated Mom of Emily, almost 10 w/CF and Ashley 12 w/o CF

 

[jayotto]

So.......

My daughter, Emily 9 y/o w/CF, is being admitted today. She started having a wet cough and we had a GI appointment at TCH, so afterwards I went downstairs to Pulmonary so her nurse could listen to it. Her doctor just happend to be back in the office (she was out of the country for 1 month), and really let us have it. Emily has not gained any weight during the last 9 months. She has a G-button that we use occasionally because after 2 nights of feeds, she has the worse stomach pains and I can't bear to see her in pain. Yes, I know Emily is thin - but my other daughter without CF is thin too. She is also really tall and bigger than the other CFers at her school. The other doctors seem to think she looks okay.

Here is the kicker ---- The doctor informed me yesterday, that Emiy cultured Staph on her last visit. This was 3 months ago! Why am I just hearing about this now? I always ask them to give me the culture resuts, and now that I think about it, they never give them to me - except to say that she cultured her regular psuedemonas again.

We have been going to this doctor ever since Emiy was diagnosed at birth - but I am getting so frustrated!

So - we are mainly going in for weight, but I am assuming she will also be on antibiotics. Keep your fingers crossed that we are out by September 17 - this is her 10th Birthday - and I think she is tired of spending every holiday in the hospital - we were in at X-mas last year too!

Frustrated Mom of Emily, almost 10 w/CF and Ashley 12 w/o CF

 

[jayotto]

So.......

My daughter, Emily 9 y/o w/CF, is being admitted today. She started having a wet cough and we had a GI appointment at TCH, so afterwards I went downstairs to Pulmonary so her nurse could listen to it. Her doctor just happend to be back in the office (she was out of the country for 1 month), and really let us have it. Emily has not gained any weight during the last 9 months. She has a G-button that we use occasionally because after 2 nights of feeds, she has the worse stomach pains and I can't bear to see her in pain. Yes, I know Emily is thin - but my other daughter without CF is thin too. She is also really tall and bigger than the other CFers at her school. The other doctors seem to think she looks okay.

Here is the kicker ---- The doctor informed me yesterday, that Emiy cultured Staph on her last visit. This was 3 months ago! Why am I just hearing about this now? I always ask them to give me the culture resuts, and now that I think about it, they never give them to me - except to say that she cultured her regular psuedemonas again.

We have been going to this doctor ever since Emiy was diagnosed at birth - but I am getting so frustrated!

So - we are mainly going in for weight, but I am assuming she will also be on antibiotics. Keep your fingers crossed that we are out by September 17 - this is her 10th Birthday - and I think she is tired of spending every holiday in the hospital - we were in at X-mas last year too!

Frustrated Mom of Emily, almost 10 w/CF and Ashley 12 w/o CF

 

[jayotto]

So.......

My daughter, Emily 9 y/o w/CF, is being admitted today. She started having a wet cough and we had a GI appointment at TCH, so afterwards I went downstairs to Pulmonary so her nurse could listen to it. Her doctor just happend to be back in the office (she was out of the country for 1 month), and really let us have it. Emily has not gained any weight during the last 9 months. She has a G-button that we use occasionally because after 2 nights of feeds, she has the worse stomach pains and I can't bear to see her in pain. Yes, I know Emily is thin - but my other daughter without CF is thin too. She is also really tall and bigger than the other CFers at her school. The other doctors seem to think she looks okay.

Here is the kicker ---- The doctor informed me yesterday, that Emiy cultured Staph on her last visit. This was 3 months ago! Why am I just hearing about this now? I always ask them to give me the culture resuts, and now that I think about it, they never give them to me - except to say that she cultured her regular psuedemonas again.

We have been going to this doctor ever since Emiy was diagnosed at birth - but I am getting so frustrated!

So - we are mainly going in for weight, but I am assuming she will also be on antibiotics. Keep your fingers crossed that we are out by September 17 - this is her 10th Birthday - and I think she is tired of spending every holiday in the hospital - we were in at X-mas last year too!

Frustrated Mom of Emily, almost 10 w/CF and Ashley 12 w/o CF

 

[jayotto]

So.......
<br />
<br />My daughter, Emily 9 y/o w/CF, is being admitted today. She started having a wet cough and we had a GI appointment at TCH, so afterwards I went downstairs to Pulmonary so her nurse could listen to it. Her doctor just happend to be back in the office (she was out of the country for 1 month), and really let us have it. Emily has not gained any weight during the last 9 months. She has a G-button that we use occasionally because after 2 nights of feeds, she has the worse stomach pains and I can't bear to see her in pain. Yes, I know Emily is thin - but my other daughter without CF is thin too. She is also really tall and bigger than the other CFers at her school. The other doctors seem to think she looks okay.
<br />
<br />Here is the kicker ---- The doctor informed me yesterday, that Emiy cultured Staph on her last visit. This was 3 months ago! Why am I just hearing about this now? I always ask them to give me the culture resuts, and now that I think about it, they never give them to me - except to say that she cultured her regular psuedemonas again.
<br />
<br />We have been going to this doctor ever since Emiy was diagnosed at birth - but I am getting so frustrated!
<br />
<br />So - we are mainly going in for weight, but I am assuming she will also be on antibiotics. Keep your fingers crossed that we are out by September 17 - this is her 10th Birthday - and I think she is tired of spending every holiday in the hospital - we were in at X-mas last year too!
<br />
<br />Frustrated Mom of Emily, almost 10 w/CF and Ashley 12 w/o CF

 

[Ratatosk]

Are they treating her pseudo at all? I got frustrated with the local cf clinic not giving me results, or telling me that DS was fine, only to find out he was culturing steno malt, H. Flu and they just chose not to tell us or treat it. So I now request a copy of his labs, doctors notes, etc. from the release of info department. So I can see them for myself AND forward the info on to his primary CF doctor in the City who DID choose to treat those bugs.

Oh and the local doctor usually spend the entire office visit berating me about DS' weight as well, yet doesn't offer any solutions to the problem other than if his vitamin levels come back low we "could" speak with the dietician. Sigh...

 

[Ratatosk]

Are they treating her pseudo at all? I got frustrated with the local cf clinic not giving me results, or telling me that DS was fine, only to find out he was culturing steno malt, H. Flu and they just chose not to tell us or treat it. So I now request a copy of his labs, doctors notes, etc. from the release of info department. So I can see them for myself AND forward the info on to his primary CF doctor in the City who DID choose to treat those bugs.

Oh and the local doctor usually spend the entire office visit berating me about DS' weight as well, yet doesn't offer any solutions to the problem other than if his vitamin levels come back low we "could" speak with the dietician. Sigh...

 

[Ratatosk]

Are they treating her pseudo at all? I got frustrated with the local cf clinic not giving me results, or telling me that DS was fine, only to find out he was culturing steno malt, H. Flu and they just chose not to tell us or treat it. So I now request a copy of his labs, doctors notes, etc. from the release of info department. So I can see them for myself AND forward the info on to his primary CF doctor in the City who DID choose to treat those bugs.

Oh and the local doctor usually spend the entire office visit berating me about DS' weight as well, yet doesn't offer any solutions to the problem other than if his vitamin levels come back low we "could" speak with the dietician. Sigh...

 

[Ratatosk]

Are they treating her pseudo at all? I got frustrated with the local cf clinic not giving me results, or telling me that DS was fine, only to find out he was culturing steno malt, H. Flu and they just chose not to tell us or treat it. So I now request a copy of his labs, doctors notes, etc. from the release of info department. So I can see them for myself AND forward the info on to his primary CF doctor in the City who DID choose to treat those bugs.

Oh and the local doctor usually spend the entire office visit berating me about DS' weight as well, yet doesn't offer any solutions to the problem other than if his vitamin levels come back low we "could" speak with the dietician. Sigh...

 

[Ratatosk]

Are they treating her pseudo at all? I got frustrated with the local cf clinic not giving me results, or telling me that DS was fine, only to find out he was culturing steno malt, H. Flu and they just chose not to tell us or treat it. So I now request a copy of his labs, doctors notes, etc. from the release of info department. So I can see them for myself AND forward the info on to his primary CF doctor in the City who DID choose to treat those bugs.
<br />
<br />Oh and the local doctor usually spend the entire office visit berating me about DS' weight as well, yet doesn't offer any solutions to the problem other than if his vitamin levels come back low we "could" speak with the dietician. Sigh...