Hospitalizations

T

threebabies

Member
Hi I usally don't write I mostly read. However, I am really concerned about my daughter. She is 3 years old and in the hospital on ivs. This is her third hospitaliztion in 16 months. Last May she was hospitalized after the doc did a bronchcoscopy. She had a light growth of PA. She has been on tobi every other month since then. She is now growing serratia. We are pretty diligent about doing her therapies. I just was wondering is it typical to have 3 exaserbations in 16 months. Does anyone have any input?

Gina,
mom to sophia 3, peter and gavin 19 months all with cf
 
T

threebabies

Member
Hi I usally don't write I mostly read. However, I am really concerned about my daughter. She is 3 years old and in the hospital on ivs. This is her third hospitaliztion in 16 months. Last May she was hospitalized after the doc did a bronchcoscopy. She had a light growth of PA. She has been on tobi every other month since then. She is now growing serratia. We are pretty diligent about doing her therapies. I just was wondering is it typical to have 3 exaserbations in 16 months. Does anyone have any input?

Gina,
mom to sophia 3, peter and gavin 19 months all with cf
 
T

threebabies

Member
Hi I usally don't write I mostly read. However, I am really concerned about my daughter. She is 3 years old and in the hospital on ivs. This is her third hospitaliztion in 16 months. Last May she was hospitalized after the doc did a bronchcoscopy. She had a light growth of PA. She has been on tobi every other month since then. She is now growing serratia. We are pretty diligent about doing her therapies. I just was wondering is it typical to have 3 exaserbations in 16 months. Does anyone have any input?
<br />
<br />Gina,
<br />mom to sophia 3, peter and gavin 19 months all with cf
 
C

Cmk0808

New member
Gina, my boyfriend is 26 (almost 27 ) with cf. This has been by far the worst winter for him also. He has had more hospitalizations then I can count. He is not a fan of Tobi. Of course it effects everyone differently, but whenever the drs tell him to try it he finds that it makes him feel very tight. He does the study drug aztreonam (now FDA approved Cayston) month on month off like you do the Tobi. He says it helps him alot, Maybe its something you could look into for your daughter. Good Luck and best wishes.

Christina
GF of 6yrs to Edward 26 w/CF
 
C

Cmk0808

New member
Gina, my boyfriend is 26 (almost 27 ) with cf. This has been by far the worst winter for him also. He has had more hospitalizations then I can count. He is not a fan of Tobi. Of course it effects everyone differently, but whenever the drs tell him to try it he finds that it makes him feel very tight. He does the study drug aztreonam (now FDA approved Cayston) month on month off like you do the Tobi. He says it helps him alot, Maybe its something you could look into for your daughter. Good Luck and best wishes.

Christina
GF of 6yrs to Edward 26 w/CF
 
C

Cmk0808

New member
Gina, my boyfriend is 26 (almost 27 ) with cf. This has been by far the worst winter for him also. He has had more hospitalizations then I can count. He is not a fan of Tobi. Of course it effects everyone differently, but whenever the drs tell him to try it he finds that it makes him feel very tight. He does the study drug aztreonam (now FDA approved Cayston) month on month off like you do the Tobi. He says it helps him alot, Maybe its something you could look into for your daughter. Good Luck and best wishes.
<br />
<br />Christina
<br />GF of 6yrs to Edward 26 w/CF
 
C

Cherylwithone

Guest
To be honest 3 in 16 months did not surprise me. One year my daughter had 4. No matter what we did she kept getting sick. She was admitted twice last year. Which to me is a good year. I am hoping for zero this year.

I think with all the germs and stuff they are bound to get sick. We can only try and do our best.

Your daughter might have never gotten rid of the first bug and it just brewed in her lungs and kept popping up.
 
C

Cherylwithone

Guest
To be honest 3 in 16 months did not surprise me. One year my daughter had 4. No matter what we did she kept getting sick. She was admitted twice last year. Which to me is a good year. I am hoping for zero this year.

I think with all the germs and stuff they are bound to get sick. We can only try and do our best.

Your daughter might have never gotten rid of the first bug and it just brewed in her lungs and kept popping up.
 
C

Cherylwithone

Guest
To be honest 3 in 16 months did not surprise me. One year my daughter had 4. No matter what we did she kept getting sick. She was admitted twice last year. Which to me is a good year. I am hoping for zero this year.
<br />
<br />I think with all the germs and stuff they are bound to get sick. We can only try and do our best.
<br />
<br />Your daughter might have never gotten rid of the first bug and it just brewed in her lungs and kept popping up.
 
T

threebabies

Member
Thanks for the replies.... Sophia has been on IV for almost 3 weeks. She still is coughing. She is going to have another bronch tomorrow to see if anything is brewing deep in her lungs. We will see what happen..


Gina, mom to Sophia 3, Peter & Gavin 19 months, all w/cf df508 &ps849x
 
T

threebabies

Member
Thanks for the replies.... Sophia has been on IV for almost 3 weeks. She still is coughing. She is going to have another bronch tomorrow to see if anything is brewing deep in her lungs. We will see what happen..


Gina, mom to Sophia 3, Peter & Gavin 19 months, all w/cf df508 &ps849x
 
T

threebabies

Member
Thanks for the replies.... Sophia has been on IV for almost 3 weeks. She still is coughing. She is going to have another bronch tomorrow to see if anything is brewing deep in her lungs. We will see what happen..
<br />
<br />
<br />Gina, mom to Sophia 3, Peter & Gavin 19 months, all w/cf df508 &ps849x
 
G

Giggles

New member
CF is different for everyone unfortunately. So what happens to one person may or may not happen to another. 3 exacerbations in 16 months just means she is having issues obviously but there is no "normal" with CF. Sorry she is having such a hard time. I know she is little so formal exercise could be hard but keep her ACTIVE when she is feeling well, eating right and getting rest and doing ALL treatments that is the best advise I got.

Stay strong and hang in there!
 
G

Giggles

New member
CF is different for everyone unfortunately. So what happens to one person may or may not happen to another. 3 exacerbations in 16 months just means she is having issues obviously but there is no "normal" with CF. Sorry she is having such a hard time. I know she is little so formal exercise could be hard but keep her ACTIVE when she is feeling well, eating right and getting rest and doing ALL treatments that is the best advise I got.

Stay strong and hang in there!
 
G

Giggles

New member
CF is different for everyone unfortunately. So what happens to one person may or may not happen to another. 3 exacerbations in 16 months just means she is having issues obviously but there is no "normal" with CF. Sorry she is having such a hard time. I know she is little so formal exercise could be hard but keep her ACTIVE when she is feeling well, eating right and getting rest and doing ALL treatments that is the best advise I got.
<br />
<br />Stay strong and hang in there!
 
T

threebabies

Member
Sophia just came out from the procedure. She was very irritable. Again, docs were so surprised see how much junk she had down there. They were surprised b/c she sounds clear as a bell through the stethoscope. Also she is very energetic. This happened last May when they did the bronch she always sounded good through the stethoscope. Yet she had a bad exacerbation.
 
T

threebabies

Member
Sophia just came out from the procedure. She was very irritable. Again, docs were so surprised see how much junk she had down there. They were surprised b/c she sounds clear as a bell through the stethoscope. Also she is very energetic. This happened last May when they did the bronch she always sounded good through the stethoscope. Yet she had a bad exacerbation.
 
T

threebabies

Member
Sophia just came out from the procedure. She was very irritable. Again, docs were so surprised see how much junk she had down there. They were surprised b/c she sounds clear as a bell through the stethoscope. Also she is very energetic. This happened last May when they did the bronch she always sounded good through the stethoscope. Yet she had a bad exacerbation.
 
You must log in or register to reply here.
Top