In hospital - first time

E

edan

Guest
So, DD diagnosed in may this year simply because my husband and I found out we were carriers. Utter shock to us because at the ripe old age of 3 she hadn't had a single infection in her lungs or any unusual coughing. She is also pancreatic sufficient. So we proactively started xopanex and CPR 1x/day.

For the last six weeks she has had a string of colds along with the rest of the family. took her to the doc Monday because it was day 14 of a cold. They said she had a little crackling in her lungs and 94 o2 level. So, they said we should admit to the hospital. Now they are doing the vest 4x/day with albuterol plus iv antibiotics.

Can someone please give me hope that this isn't necessarily going to mean we are destined to have a lot of hospital stays in our near future? Did anyone have a similar experience?

Thanks...
 
E

edan

Guest
So, DD diagnosed in may this year simply because my husband and I found out we were carriers. Utter shock to us because at the ripe old age of 3 she hadn't had a single infection in her lungs or any unusual coughing. She is also pancreatic sufficient. So we proactively started xopanex and CPR 1x/day.

For the last six weeks she has had a string of colds along with the rest of the family. took her to the doc Monday because it was day 14 of a cold. They said she had a little crackling in her lungs and 94 o2 level. So, they said we should admit to the hospital. Now they are doing the vest 4x/day with albuterol plus iv antibiotics.

Can someone please give me hope that this isn't necessarily going to mean we are destined to have a lot of hospital stays in our near future? Did anyone have a similar experience?

Thanks...
 
E

edan

Guest
So, DD diagnosed in may this year simply because my husband and I found out we were carriers. Utter shock to us because at the ripe old age of 3 she hadn't had a single infection in her lungs or any unusual coughing. She is also pancreatic sufficient. So we proactively started xopanex and CPR 1x/day.
<br />
<br />For the last six weeks she has had a string of colds along with the rest of the family. took her to the doc Monday because it was day 14 of a cold. They said she had a little crackling in her lungs and 94 o2 level. So, they said we should admit to the hospital. Now they are doing the vest 4x/day with albuterol plus iv antibiotics.
<br />
<br />Can someone please give me hope that this isn't necessarily going to mean we are destined to have a lot of hospital stays in our near future? Did anyone have a similar experience?
<br />
<br />Thanks...
 
M

mag6125

New member
It doesn't neccessarily mean this will be frequent thing for you, a lot of CF docs like to be very aggressive in treating infections. Plus if she's never had ivs before they wouldn't let you do them at home until they're sure she doesn't have any kind of reaction to them. When I was young I use to go 5-6 years in between hospital stays and ivs. Its gotten more frequent as I've gotten older but the best thing you can do is to be proactive now to keep her as healthy as possible for as long as possible. Good luck with the hospital stay and hope she has a quick recovery!
 
M

mag6125

New member
It doesn't neccessarily mean this will be frequent thing for you, a lot of CF docs like to be very aggressive in treating infections. Plus if she's never had ivs before they wouldn't let you do them at home until they're sure she doesn't have any kind of reaction to them. When I was young I use to go 5-6 years in between hospital stays and ivs. Its gotten more frequent as I've gotten older but the best thing you can do is to be proactive now to keep her as healthy as possible for as long as possible. Good luck with the hospital stay and hope she has a quick recovery!
 
M

mag6125

New member
It doesn't neccessarily mean this will be frequent thing for you, a lot of CF docs like to be very aggressive in treating infections. Plus if she's never had ivs before they wouldn't let you do them at home until they're sure she doesn't have any kind of reaction to them. When I was young I use to go 5-6 years in between hospital stays and ivs. Its gotten more frequent as I've gotten older but the best thing you can do is to be proactive now to keep her as healthy as possible for as long as possible. Good luck with the hospital stay and hope she has a quick recovery!
 
M

Mommafirst

Guest
I know the first hosptialization is overwhleming, but try to deal with the day to day and not what this means in the big picture. (I know -- impossible!).

alyssa has been hospitalized several times. Last summer she was hospitalized and it was the third time in a year. I was freaked out!! Really concerned about what this meant. The started her on pulmozyme that day and everything changed. She hasn't been admitted since.

The thing is, maybe this is a good thing (HAH!) in that it will mentally make you take it more seriously (this isn't an accusation -- I just know that until they wind up with something CF is, its hard to believe its true) -- and now you'll be even more proactive with her health.

I hope this helps -- I don't mean to make it harder. CF teams are quick to hospitalized, especially when they are young. ((((HUGS))))
 
M

Mommafirst

Guest
I know the first hosptialization is overwhleming, but try to deal with the day to day and not what this means in the big picture. (I know -- impossible!).

alyssa has been hospitalized several times. Last summer she was hospitalized and it was the third time in a year. I was freaked out!! Really concerned about what this meant. The started her on pulmozyme that day and everything changed. She hasn't been admitted since.

The thing is, maybe this is a good thing (HAH!) in that it will mentally make you take it more seriously (this isn't an accusation -- I just know that until they wind up with something CF is, its hard to believe its true) -- and now you'll be even more proactive with her health.

I hope this helps -- I don't mean to make it harder. CF teams are quick to hospitalized, especially when they are young. ((((HUGS))))
 
M

Mommafirst

Guest
I know the first hosptialization is overwhleming, but try to deal with the day to day and not what this means in the big picture. (I know -- impossible!).
<br />
<br />alyssa has been hospitalized several times. Last summer she was hospitalized and it was the third time in a year. I was freaked out!! Really concerned about what this meant. The started her on pulmozyme that day and everything changed. She hasn't been admitted since.
<br />
<br />The thing is, maybe this is a good thing (HAH!) in that it will mentally make you take it more seriously (this isn't an accusation -- I just know that until they wind up with something CF is, its hard to believe its true) -- and now you'll be even more proactive with her health.
<br />
<br />I hope this helps -- I don't mean to make it harder. CF teams are quick to hospitalized, especially when they are young. ((((HUGS))))
<br />
 
Z

zaj1139

New member
By the time my grandson was dx he was in the hospital for over 3 weeks.

Most recently, he just got over his first cultured infection after the hospital. treatment was done at home w/ creon and TOBI which was a two month treatment plan for him at least. Last Friday he had a throat culture to make sure the bug was killed. This Tueday night I noticed he was breathing really funny sounding. Wednesday morining I cried all the way to work convinced we not only did not kill the bug it had grown. All I could think of is; he is going to have to go back to the hospital, who will stay with him and when (my dtr and I would have to juggle our jobs), how long will it be etc. etc. etc. But guess what? The same day his test came back normal! I was so happy I almost jumped out of my chair. All that worrying was for NOT.

Now I certainly can say I am no expert on this matter as he was just dx in March but I have learned thus far is; there are no reassurances, everyone is different and although it is a fatal disease its not fatal for him today.

We do the best we can and try to enjoy every minute we can with him. Also from this blog "tune ups" are needed and make them feel better in the long run. Enjoy the idea that DD is in really good hands and take a little presure off yourself - you deserve it.

sorry for the rambling I just know how you feel
 
Z

zaj1139

New member
By the time my grandson was dx he was in the hospital for over 3 weeks.

Most recently, he just got over his first cultured infection after the hospital. treatment was done at home w/ creon and TOBI which was a two month treatment plan for him at least. Last Friday he had a throat culture to make sure the bug was killed. This Tueday night I noticed he was breathing really funny sounding. Wednesday morining I cried all the way to work convinced we not only did not kill the bug it had grown. All I could think of is; he is going to have to go back to the hospital, who will stay with him and when (my dtr and I would have to juggle our jobs), how long will it be etc. etc. etc. But guess what? The same day his test came back normal! I was so happy I almost jumped out of my chair. All that worrying was for NOT.

Now I certainly can say I am no expert on this matter as he was just dx in March but I have learned thus far is; there are no reassurances, everyone is different and although it is a fatal disease its not fatal for him today.

We do the best we can and try to enjoy every minute we can with him. Also from this blog "tune ups" are needed and make them feel better in the long run. Enjoy the idea that DD is in really good hands and take a little presure off yourself - you deserve it.

sorry for the rambling I just know how you feel
 
Z

zaj1139

New member
By the time my grandson was dx he was in the hospital for over 3 weeks.
<br />
<br />Most recently, he just got over his first cultured infection after the hospital. treatment was done at home w/ creon and TOBI which was a two month treatment plan for him at least. Last Friday he had a throat culture to make sure the bug was killed. This Tueday night I noticed he was breathing really funny sounding. Wednesday morining I cried all the way to work convinced we not only did not kill the bug it had grown. All I could think of is; he is going to have to go back to the hospital, who will stay with him and when (my dtr and I would have to juggle our jobs), how long will it be etc. etc. etc. But guess what? The same day his test came back normal! I was so happy I almost jumped out of my chair. All that worrying was for NOT.
<br />
<br />Now I certainly can say I am no expert on this matter as he was just dx in March but I have learned thus far is; there are no reassurances, everyone is different and although it is a fatal disease its not fatal for him today.
<br />
<br />We do the best we can and try to enjoy every minute we can with him. Also from this blog "tune ups" are needed and make them feel better in the long run. Enjoy the idea that DD is in really good hands and take a little presure off yourself - you deserve it.
<br />
<br />sorry for the rambling I just know how you feel
 
J

jennylivingston

Guest
Just wanted to jump in and say that the others are right -- this hospitalization doesn't necessarily mean this type of thing will be commonplace now.

As a child, from the ages of about 7-13 I was hospitalized once a year, every year. My doctors were very proactive and felt that preventative care was key, so each summer I had a two week in-hospital "tune-up" regardless of whether or not I was currently fighting an infection. Then, I went almost a decade without being hospitalized at all. Recently, however, I've been hospitalized twice in the past nine months.

It's an emotional roller coaster each time, and unfortunately that never changes (at least for me it hasn't). But, try to take comfort in knowing that these tune-ups help so much in the long run. And as hard as it is, try not to think of it as too much of a bad thing. It's always better to go in and get treatment before things get out of hand.

Hang in there! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
J

jennylivingston

Guest
Just wanted to jump in and say that the others are right -- this hospitalization doesn't necessarily mean this type of thing will be commonplace now.

As a child, from the ages of about 7-13 I was hospitalized once a year, every year. My doctors were very proactive and felt that preventative care was key, so each summer I had a two week in-hospital "tune-up" regardless of whether or not I was currently fighting an infection. Then, I went almost a decade without being hospitalized at all. Recently, however, I've been hospitalized twice in the past nine months.

It's an emotional roller coaster each time, and unfortunately that never changes (at least for me it hasn't). But, try to take comfort in knowing that these tune-ups help so much in the long run. And as hard as it is, try not to think of it as too much of a bad thing. It's always better to go in and get treatment before things get out of hand.

Hang in there! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
J

jennylivingston

Guest
Just wanted to jump in and say that the others are right -- this hospitalization doesn't necessarily mean this type of thing will be commonplace now.
<br />
<br />As a child, from the ages of about 7-13 I was hospitalized once a year, every year. My doctors were very proactive and felt that preventative care was key, so each summer I had a two week in-hospital "tune-up" regardless of whether or not I was currently fighting an infection. Then, I went almost a decade without being hospitalized at all. Recently, however, I've been hospitalized twice in the past nine months.
<br />
<br />It's an emotional roller coaster each time, and unfortunately that never changes (at least for me it hasn't). But, try to take comfort in knowing that these tune-ups help so much in the long run. And as hard as it is, try not to think of it as too much of a bad thing. It's always better to go in and get treatment before things get out of hand.
<br />
<br />Hang in there! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
E

edan

Guest
Thanks everyone for your replies. I am glad we are in here. Looks like she needed this "tune up".

Cheers
 
E

edan

Guest
Thanks everyone for your replies. I am glad we are in here. Looks like she needed this "tune up".

Cheers
 
E

edan

Guest
Thanks everyone for your replies. I am glad we are in here. Looks like she needed this "tune up".
<br />
<br />Cheers
 
R

reagansmom

New member
My daughter was diagnosed at 14 months and stayed in the hospital 19 days, the last 14 on IV's to fight a staph infection. But since beginning preventative treatment (Vest 2 times a day, Pulmozyme and Hyper-Sal) she has not been back and she just turned three. Perhaps the doctors will want to step up the preventative treatment at home.
 
R

reagansmom

New member
My daughter was diagnosed at 14 months and stayed in the hospital 19 days, the last 14 on IV's to fight a staph infection. But since beginning preventative treatment (Vest 2 times a day, Pulmozyme and Hyper-Sal) she has not been back and she just turned three. Perhaps the doctors will want to step up the preventative treatment at home.
 
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