Jessica, I just wanted to say you are being a good mommy by being on this site and learning more about cf and care for your child. After all how can you question the care or not question the care for that matter that your daughter is getting if you aren't informed. Although some of us might come off sort of strong, we're all here to learn and are happy that you're striving to be involved with Jae's care not just being a yes man. It's not fun putting yourself out on a limb to be attacked. It takes A LOT of work to care for a cfer and your understanding of why she needs you is so important. I hope you keep posting. No question is stupid. The more you read on here the more you'll see how much varies with cf. For example, the way you say all cfers cough up mucus. This isn't true. There are many adults on here that aren't productive. Does it mean they have mild cf? Not always. Some just aren't doing proper lung clearance, some are dehydrated and can't get the mucus out while others maybe don't have much mucus to get out. A change in mucus production amount is reason for concern if nothing has changed. The fact that Jae has started the Vest might very well be the reason for more mucus but the doctors don't want to see a productive cough at age 5 if it can be avoided. Not to say they don't want her to get the mucus out but rather they don't want there to be any mucus to come out. A sputum culture is a great next step after a mucus production increase is discovered because like others have said if there's no bug to treat then IVs aren't the thing to do. Maybe it is allergy related. You've got to give them credit for trying to get to the bottom of it.
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tune ups??
- Thread starter jdprecious
- Start date
Jessica, I just wanted to say you are being a good mommy by being on this site and learning more about cf and care for your child. After all how can you question the care or not question the care for that matter that your daughter is getting if you aren't informed. Although some of us might come off sort of strong, we're all here to learn and are happy that you're striving to be involved with Jae's care not just being a yes man. It's not fun putting yourself out on a limb to be attacked. It takes A LOT of work to care for a cfer and your understanding of why she needs you is so important. I hope you keep posting. No question is stupid. The more you read on here the more you'll see how much varies with cf. For example, the way you say all cfers cough up mucus. This isn't true. There are many adults on here that aren't productive. Does it mean they have mild cf? Not always. Some just aren't doing proper lung clearance, some are dehydrated and can't get the mucus out while others maybe don't have much mucus to get out. A change in mucus production amount is reason for concern if nothing has changed. The fact that Jae has started the Vest might very well be the reason for more mucus but the doctors don't want to see a productive cough at age 5 if it can be avoided. Not to say they don't want her to get the mucus out but rather they don't want there to be any mucus to come out. A sputum culture is a great next step after a mucus production increase is discovered because like others have said if there's no bug to treat then IVs aren't the thing to do. Maybe it is allergy related. You've got to give them credit for trying to get to the bottom of it.
Emily65Roses
New member
Okay I see both sides of this one, though more Jada's than the other. I see what you're saying about it not being your normal doc, but that's about it. Get the opinion of your normal doc. If s/he still wants IVs, do them. Period.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
Emily65Roses
New member
Okay I see both sides of this one, though more Jada's than the other. I see what you're saying about it not being your normal doc, but that's about it. Get the opinion of your normal doc. If s/he still wants IVs, do them. Period.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
Emily65Roses
New member
Okay I see both sides of this one, though more Jada's than the other. I see what you're saying about it not being your normal doc, but that's about it. Get the opinion of your normal doc. If s/he still wants IVs, do them. Period.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
Emily65Roses
New member
Okay I see both sides of this one, though more Jada's than the other. I see what you're saying about it not being your normal doc, but that's about it. Get the opinion of your normal doc. If s/he still wants IVs, do them. Period.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
Emily65Roses
New member
Okay I see both sides of this one, though more Jada's than the other. I see what you're saying about it not being your normal doc, but that's about it. Get the opinion of your normal doc. If s/he still wants IVs, do them. Period.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
Emily65Roses
New member
Okay I see both sides of this one, though more Jada's than the other. I see what you're saying about it not being your normal doc, but that's about it. Get the opinion of your normal doc. If s/he still wants IVs, do them. Period.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
I didn't have my first round until I was 16, but it doesn't mean much. I was lucky as a child. Never regularly cultured anything until I was a teenager. There are plenty of kids here who have been on IVs several times as a kid and are doing well. PICCs and ports aren't as scary as them seem to be before you get into them. Once you do, it's not that big a deal. I know it's a scary prospect for now, but your daughter's health should come above any fears you might have.
The first few tune ups I had, I felt GREAT afterwards. It was 100% worth it. I felt like crap before I went in... I got my IVs, and my health was much better. Tune ups are not a bad thing.
In addition, if you're worried about bugs in the hospital, ask to do IVs at home. They may keep her for a few days to monitor side effects, but then likely you can take her home. My first IVs, I had 4 days inpatient, and then the other 10 at home.
ElizabethlovesChris
New member
Wow, I'm shocked by the fact that some CFers who are diagnosed at birth don't have inpatient hospitalizations in childhood - that's awesome for you, but shocking for me with my husband's experience.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
ElizabethlovesChris
New member
Wow, I'm shocked by the fact that some CFers who are diagnosed at birth don't have inpatient hospitalizations in childhood - that's awesome for you, but shocking for me with my husband's experience.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
ElizabethlovesChris
New member
Wow, I'm shocked by the fact that some CFers who are diagnosed at birth don't have inpatient hospitalizations in childhood - that's awesome for you, but shocking for me with my husband's experience.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
ElizabethlovesChris
New member
Wow, I'm shocked by the fact that some CFers who are diagnosed at birth don't have inpatient hospitalizations in childhood - that's awesome for you, but shocking for me with my husband's experience.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
ElizabethlovesChris
New member
Wow, I'm shocked by the fact that some CFers who are diagnosed at birth don't have inpatient hospitalizations in childhood - that's awesome for you, but shocking for me with my husband's experience.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
ElizabethlovesChris
New member
Wow, I'm shocked by the fact that some CFers who are diagnosed at birth don't have inpatient hospitalizations in childhood - that's awesome for you, but shocking for me with my husband's experience.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.
He was dx at 8 days old and went in TONS throughout childhood & adolescence. He would go in sometimes 6 or 7 times a year, for 2-3 weeks at a time - talk about completely changing your childhood. I suppose perhaps he was a more severe case, but I would be grateful that your child is already 5 and hasn't had to go in yet. I wouldn't view it as the beginning of the end at all - my husband recently turned 30 and is around upper 50% in his PFTs.
Best of luck to you in deciding your course of action - keep in mind though that hospital tune-ups are going to become a reality for her at some point and they really might not be all that bad if she only does them once a year or so.