Very scared Dad!

JW212 · Mar 1, 2008

HI Kaylasdad
I am also new to this site and really find it to be a great place!
I am so sorry about your daughter and I remember very well when our daughter was dx at age 2yrs old. Very difficult time. Every one is different but we have an 18 yr old daughter who is doing great. Only hospitalized once last year, is a cross country runner (started at a 13 min/mile...down to a 7min/mile!) , is very active in school, has lots of friends and is on her way to college this August on an academic scholarship. She does do nebs and enzymes and has sinus issues. The advice you were given so far is excellent. Dont see her as "CF", enjoy her every day and realize you are in a world right now that has come a long way in the management. When I went to nursing school (about 20 yrs ago) our text books said CF average life span was 5...that has changed quite a bit..now I believe it is 36 and I feel that will just keep moving up!
These are very special people...kids with CF seem to be very compassionate individuals. I know our daughter is really an incredible person and people comment on her to a point it brings me to tears (good ones!!). She plans on going into the medical field and so much of that comes from her personal experiences with CF. So as much as I hate to admit...even with CF....some good always come out of the bad. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hang in there, take good care...she is beautiful
JW212

JW212 · Mar 1, 2008

HI Kaylasdad
I am also new to this site and really find it to be a great place!
I am so sorry about your daughter and I remember very well when our daughter was dx at age 2yrs old. Very difficult time. Every one is different but we have an 18 yr old daughter who is doing great. Only hospitalized once last year, is a cross country runner (started at a 13 min/mile...down to a 7min/mile!) , is very active in school, has lots of friends and is on her way to college this August on an academic scholarship. She does do nebs and enzymes and has sinus issues. The advice you were given so far is excellent. Dont see her as "CF", enjoy her every day and realize you are in a world right now that has come a long way in the management. When I went to nursing school (about 20 yrs ago) our text books said CF average life span was 5...that has changed quite a bit..now I believe it is 36 and I feel that will just keep moving up!
These are very special people...kids with CF seem to be very compassionate individuals. I know our daughter is really an incredible person and people comment on her to a point it brings me to tears (good ones!!). She plans on going into the medical field and so much of that comes from her personal experiences with CF. So as much as I hate to admit...even with CF....some good always come out of the bad. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hang in there, take good care...she is beautiful
JW212

JW212 · Mar 1, 2008

HI Kaylasdad
I am also new to this site and really find it to be a great place!
I am so sorry about your daughter and I remember very well when our daughter was dx at age 2yrs old. Very difficult time. Every one is different but we have an 18 yr old daughter who is doing great. Only hospitalized once last year, is a cross country runner (started at a 13 min/mile...down to a 7min/mile!) , is very active in school, has lots of friends and is on her way to college this August on an academic scholarship. She does do nebs and enzymes and has sinus issues. The advice you were given so far is excellent. Dont see her as "CF", enjoy her every day and realize you are in a world right now that has come a long way in the management. When I went to nursing school (about 20 yrs ago) our text books said CF average life span was 5...that has changed quite a bit..now I believe it is 36 and I feel that will just keep moving up!
These are very special people...kids with CF seem to be very compassionate individuals. I know our daughter is really an incredible person and people comment on her to a point it brings me to tears (good ones!!). She plans on going into the medical field and so much of that comes from her personal experiences with CF. So as much as I hate to admit...even with CF....some good always come out of the bad. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hang in there, take good care...she is beautiful
JW212

JW212 · Mar 1, 2008

HI Kaylasdad
I am also new to this site and really find it to be a great place!
I am so sorry about your daughter and I remember very well when our daughter was dx at age 2yrs old. Very difficult time. Every one is different but we have an 18 yr old daughter who is doing great. Only hospitalized once last year, is a cross country runner (started at a 13 min/mile...down to a 7min/mile!) , is very active in school, has lots of friends and is on her way to college this August on an academic scholarship. She does do nebs and enzymes and has sinus issues. The advice you were given so far is excellent. Dont see her as "CF", enjoy her every day and realize you are in a world right now that has come a long way in the management. When I went to nursing school (about 20 yrs ago) our text books said CF average life span was 5...that has changed quite a bit..now I believe it is 36 and I feel that will just keep moving up!
These are very special people...kids with CF seem to be very compassionate individuals. I know our daughter is really an incredible person and people comment on her to a point it brings me to tears (good ones!!). She plans on going into the medical field and so much of that comes from her personal experiences with CF. So as much as I hate to admit...even with CF....some good always come out of the bad. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hang in there, take good care...she is beautiful
JW212

JW212 · Mar 1, 2008

HI Kaylasdad
 I am also new to this site and really find it to be a great place!
 I am so sorry about your daughter and I remember very well when our daughter was dx at age 2yrs old. Very difficult time. Every one is different but we have an 18 yr old daughter who is doing great. Only hospitalized once last year, is a cross country runner (started at a 13 min/mile...down to a 7min/mile!) , is very active in school, has lots of friends and is on her way to college this August on an academic scholarship. She does do nebs and enzymes and has sinus issues. The advice you were given so far is excellent. Dont see her as "CF", enjoy her every day and realize you are in a world right now that has come a long way in the management. When I went to nursing school (about 20 yrs ago) our text books said CF average life span was 5...that has changed quite a bit..now I believe it is 36 and I feel that will just keep moving up!
 These are very special people...kids with CF seem to be very compassionate individuals. I know our daughter is really an incredible person and people comment on her to a point it brings me to tears (good ones!!). She plans on going into the medical field and so much of that comes from her personal experiences with CF. So as much as I hate to admit...even with CF....some good always come out of the bad. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 Hang in there, take good care...she is beautiful
 JW212

DerricksMom · Mar 8, 2008

Hello KaylasDad,

I am very sorry to hear about your little girl. I do want to say that you need to be vigilant in making sure that everyone washes their hands before handling her. This includes nurses and doctors. At our CF clinic at the University of Minnesota, they have signs up right in the rooms that tell us it is our right to ask. That is a very hard thing to do but you need to do it. We had a bad experience at our son's first PFT (pulmonary function test). I don't think I ever saw the nurse wash her hands. Maybe she did and I just didn't see. My husband and I didn't say anything but were secretly horrified inside. I couldn't sleep for days afterward.

So, no matter how hard it is, make sure everyone has washed their hands. There are other things like bleaching her bathtub to try to get rid of the germs. A lot of the bad bugs that CF kids can get are waterborne. This means don't drop something in your sink and then pick it out and give it to her.

Best of luck and my thoughts are with you.

DerricksMom · Mar 8, 2008

Hello KaylasDad,

I am very sorry to hear about your little girl. I do want to say that you need to be vigilant in making sure that everyone washes their hands before handling her. This includes nurses and doctors. At our CF clinic at the University of Minnesota, they have signs up right in the rooms that tell us it is our right to ask. That is a very hard thing to do but you need to do it. We had a bad experience at our son's first PFT (pulmonary function test). I don't think I ever saw the nurse wash her hands. Maybe she did and I just didn't see. My husband and I didn't say anything but were secretly horrified inside. I couldn't sleep for days afterward.

So, no matter how hard it is, make sure everyone has washed their hands. There are other things like bleaching her bathtub to try to get rid of the germs. A lot of the bad bugs that CF kids can get are waterborne. This means don't drop something in your sink and then pick it out and give it to her.

Best of luck and my thoughts are with you.

DerricksMom · Mar 8, 2008

Hello KaylasDad,

I am very sorry to hear about your little girl. I do want to say that you need to be vigilant in making sure that everyone washes their hands before handling her. This includes nurses and doctors. At our CF clinic at the University of Minnesota, they have signs up right in the rooms that tell us it is our right to ask. That is a very hard thing to do but you need to do it. We had a bad experience at our son's first PFT (pulmonary function test). I don't think I ever saw the nurse wash her hands. Maybe she did and I just didn't see. My husband and I didn't say anything but were secretly horrified inside. I couldn't sleep for days afterward.

So, no matter how hard it is, make sure everyone has washed their hands. There are other things like bleaching her bathtub to try to get rid of the germs. A lot of the bad bugs that CF kids can get are waterborne. This means don't drop something in your sink and then pick it out and give it to her.

Best of luck and my thoughts are with you.

DerricksMom · Mar 8, 2008

Hello KaylasDad,

I am very sorry to hear about your little girl. I do want to say that you need to be vigilant in making sure that everyone washes their hands before handling her. This includes nurses and doctors. At our CF clinic at the University of Minnesota, they have signs up right in the rooms that tell us it is our right to ask. That is a very hard thing to do but you need to do it. We had a bad experience at our son's first PFT (pulmonary function test). I don't think I ever saw the nurse wash her hands. Maybe she did and I just didn't see. My husband and I didn't say anything but were secretly horrified inside. I couldn't sleep for days afterward.

So, no matter how hard it is, make sure everyone has washed their hands. There are other things like bleaching her bathtub to try to get rid of the germs. A lot of the bad bugs that CF kids can get are waterborne. This means don't drop something in your sink and then pick it out and give it to her.

Best of luck and my thoughts are with you.

DerricksMom · Mar 8, 2008

Hello KaylasDad,
 
 I am very sorry to hear about your little girl. I do want to say that you need to be vigilant in making sure that everyone washes their hands before handling her. This includes nurses and doctors. At our CF clinic at the University of Minnesota, they have signs up right in the rooms that tell us it is our right to ask. That is a very hard thing to do but you need to do it. We had a bad experience at our son's first PFT (pulmonary function test). I don't think I ever saw the nurse wash her hands. Maybe she did and I just didn't see. My husband and I didn't say anything but were secretly horrified inside. I couldn't sleep for days afterward.
 
 So, no matter how hard it is, make sure everyone has washed their hands. There are other things like bleaching her bathtub to try to get rid of the germs. A lot of the bad bugs that CF kids can get are waterborne. This means don't drop something in your sink and then pick it out and give it to her.
 
 Best of luck and my thoughts are with you.

kaylasdad · Mar 8, 2008

Thanks you guys, your advise means alot to me.
Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?

kaylasdad · Mar 8, 2008

Thanks you guys, your advise means alot to me.
Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?

kaylasdad · Mar 8, 2008

Thanks you guys, your advise means alot to me.
Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?

kaylasdad · Mar 8, 2008

Thanks you guys, your advise means alot to me.
Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?

kaylasdad · Mar 8, 2008

Thanks you guys, your advise means alot to me.
 Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?

2005CFmom · Mar 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: kaylasdad

Thanks you guys, your advise means alot to me.

Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?</end quote></div>

In my opinion, rinsing the pacifer off in hot water would be fine. We can't sterilize everything kids put in their mouths!

I think the comment about not picking something out the sink is because a wet area would have more time to grow bacteria, and probably has a higher amount of bacteria than "fresh" tap water.

2005CFmom · Mar 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: kaylasdad

Thanks you guys, your advise means alot to me.

Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?</end quote></div>

In my opinion, rinsing the pacifer off in hot water would be fine. We can't sterilize everything kids put in their mouths!

I think the comment about not picking something out the sink is because a wet area would have more time to grow bacteria, and probably has a higher amount of bacteria than "fresh" tap water.

2005CFmom · Mar 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: kaylasdad

Thanks you guys, your advise means alot to me.

Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?</end quote></div>

In my opinion, rinsing the pacifer off in hot water would be fine. We can't sterilize everything kids put in their mouths!

I think the comment about not picking something out the sink is because a wet area would have more time to grow bacteria, and probably has a higher amount of bacteria than "fresh" tap water.

2005CFmom · Mar 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: kaylasdad

Thanks you guys, your advise means alot to me.

Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?</end quote>

In my opinion, rinsing the pacifer off in hot water would be fine. We can't sterilize everything kids put in their mouths!

I think the comment about not picking something out the sink is because a wet area would have more time to grow bacteria, and probably has a higher amount of bacteria than "fresh" tap water.

2005CFmom · Mar 8, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: kaylasdad
 
 Thanks you guys, your advise means alot to me.
 
 Hey Derricksmom, (or anyone)you mean if I drop her pacifier on the floor and rinse it off with hot water thats no good?</end quote>
 
 
 In my opinion, rinsing the pacifer off in hot water would be fine. We can't sterilize everything kids put in their mouths!
 
 I think the comment about not picking something out the sink is because a wet area would have more time to grow bacteria, and probably has a higher amount of bacteria than "fresh" tap water.

Very scared Dad!

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