First time in hospital?

[carmick]

I didn't have any IV antibiotics until I was like 17, at which point they'd put in a picc, keep me overnight for observation, and send me home in the morning. They might have kept me two nights the first time to make sure I could do everything on my own. I didn't think much of that, but other centers I've been to always respond with shock that I never did inpatient IVs growing up. I didn't have a real hospitalization until I was 21 when I ended up with pneumonia that was bad enough that I needed to wear both a mask and a canula to get enough O2. They kept me for like 2 1/2 weeks and then sent home to my parents (rather than school) for the rest of the month on home IVs and O2 when walking around. On the upside, I got off the O2 during the day and didn't get admitted again for over 3 years.

As far as how often docs admit, it depends big time on the doc and the center. My "real doc" at the center I've been followed at since birth rarely hospitalizes me because he thinks that whatever benefits inpatient treatment has are outweighed by the risk of new infections and the negative effect of sitting in bed all day unless I'm really sick and not responding to anything else. On the other hand, my "school doc" considers hospitalizing me right away if I come in sick because he thinks that the strong meds and increased vest will prevent my getting worse. I tend to go with the former idea as I almost always leave growing something new, be it PA or aspergillis, and need to take more antibiotics to keep it from colonizing.

 

[carmick]

I didn't have any IV antibiotics until I was like 17, at which point they'd put in a picc, keep me overnight for observation, and send me home in the morning. They might have kept me two nights the first time to make sure I could do everything on my own. I didn't think much of that, but other centers I've been to always respond with shock that I never did inpatient IVs growing up. I didn't have a real hospitalization until I was 21 when I ended up with pneumonia that was bad enough that I needed to wear both a mask and a canula to get enough O2. They kept me for like 2 1/2 weeks and then sent home to my parents (rather than school) for the rest of the month on home IVs and O2 when walking around. On the upside, I got off the O2 during the day and didn't get admitted again for over 3 years.

As far as how often docs admit, it depends big time on the doc and the center. My "real doc" at the center I've been followed at since birth rarely hospitalizes me because he thinks that whatever benefits inpatient treatment has are outweighed by the risk of new infections and the negative effect of sitting in bed all day unless I'm really sick and not responding to anything else. On the other hand, my "school doc" considers hospitalizing me right away if I come in sick because he thinks that the strong meds and increased vest will prevent my getting worse. I tend to go with the former idea as I almost always leave growing something new, be it PA or aspergillis, and need to take more antibiotics to keep it from colonizing.

 

[carmick]

I didn't have any IV antibiotics until I was like 17, at which point they'd put in a picc, keep me overnight for observation, and send me home in the morning. They might have kept me two nights the first time to make sure I could do everything on my own. I didn't think much of that, but other centers I've been to always respond with shock that I never did inpatient IVs growing up. I didn't have a real hospitalization until I was 21 when I ended up with pneumonia that was bad enough that I needed to wear both a mask and a canula to get enough O2. They kept me for like 2 1/2 weeks and then sent home to my parents (rather than school) for the rest of the month on home IVs and O2 when walking around. On the upside, I got off the O2 during the day and didn't get admitted again for over 3 years.

As far as how often docs admit, it depends big time on the doc and the center. My "real doc" at the center I've been followed at since birth rarely hospitalizes me because he thinks that whatever benefits inpatient treatment has are outweighed by the risk of new infections and the negative effect of sitting in bed all day unless I'm really sick and not responding to anything else. On the other hand, my "school doc" considers hospitalizing me right away if I come in sick because he thinks that the strong meds and increased vest will prevent my getting worse. I tend to go with the former idea as I almost always leave growing something new, be it PA or aspergillis, and need to take more antibiotics to keep it from colonizing.

 

[carmick]

I didn't have any IV antibiotics until I was like 17, at which point they'd put in a picc, keep me overnight for observation, and send me home in the morning. They might have kept me two nights the first time to make sure I could do everything on my own. I didn't think much of that, but other centers I've been to always respond with shock that I never did inpatient IVs growing up. I didn't have a real hospitalization until I was 21 when I ended up with pneumonia that was bad enough that I needed to wear both a mask and a canula to get enough O2. They kept me for like 2 1/2 weeks and then sent home to my parents (rather than school) for the rest of the month on home IVs and O2 when walking around. On the upside, I got off the O2 during the day and didn't get admitted again for over 3 years.

As far as how often docs admit, it depends big time on the doc and the center. My "real doc" at the center I've been followed at since birth rarely hospitalizes me because he thinks that whatever benefits inpatient treatment has are outweighed by the risk of new infections and the negative effect of sitting in bed all day unless I'm really sick and not responding to anything else. On the other hand, my "school doc" considers hospitalizing me right away if I come in sick because he thinks that the strong meds and increased vest will prevent my getting worse. I tend to go with the former idea as I almost always leave growing something new, be it PA or aspergillis, and need to take more antibiotics to keep it from colonizing.

 

[carmick]

I didn't have any IV antibiotics until I was like 17, at which point they'd put in a picc, keep me overnight for observation, and send me home in the morning. They might have kept me two nights the first time to make sure I could do everything on my own. I didn't think much of that, but other centers I've been to always respond with shock that I never did inpatient IVs growing up. I didn't have a real hospitalization until I was 21 when I ended up with pneumonia that was bad enough that I needed to wear both a mask and a canula to get enough O2. They kept me for like 2 1/2 weeks and then sent home to my parents (rather than school) for the rest of the month on home IVs and O2 when walking around. On the upside, I got off the O2 during the day and didn't get admitted again for over 3 years.
<br />
<br />As far as how often docs admit, it depends big time on the doc and the center. My "real doc" at the center I've been followed at since birth rarely hospitalizes me because he thinks that whatever benefits inpatient treatment has are outweighed by the risk of new infections and the negative effect of sitting in bed all day unless I'm really sick and not responding to anything else. On the other hand, my "school doc" considers hospitalizing me right away if I come in sick because he thinks that the strong meds and increased vest will prevent my getting worse. I tend to go with the former idea as I almost always leave growing something new, be it PA or aspergillis, and need to take more antibiotics to keep it from colonizing.

 

[kitomd21]

Thanks so much for all of your replies! I hope they keep coming! <img src="i/expressions/face-icon-small-tongue.gif" border="0"> Ellie hasn't cultured anything yet...I'm just wondering what we'll go through when that time does come. I know her doctor takes a laid back approach until she cultures something and then he wants her on IV meds for a few weeks. I hope that's a long way down the road! I haven't specifically asked him what to expect beyond that because I just thought of in-hospital vs. out patient care yesterday.

As some of you may remember, Ellie was hospitalized at 2 weeks old with a cough as well as bilateral eye infections. We didn't have a definitive CF diagnosis (via newborn screening) but knew we were carriers. The doctors admitted her immediately out of concern that we were dealing with CF-related respiratory issues in light of us being carriers. Her lungs always sounded "clear" and she only cultured "normal" bacteria...so, I don't know if her stay at 2 weeks really counts as a "first" hospitalization in relation to CF. I honestly think she aspirated amniotic fluid upon delivery - a CF child showing symptoms at two weeks is virtually unheard of, from what I understand. Coupled with the green ocular discharge...I think she certainly had an infection, but I like to think it wasn't related to CF. Thoughts?

 

[kitomd21]

Thanks so much for all of your replies! I hope they keep coming! <img src="i/expressions/face-icon-small-tongue.gif" border="0"> Ellie hasn't cultured anything yet...I'm just wondering what we'll go through when that time does come. I know her doctor takes a laid back approach until she cultures something and then he wants her on IV meds for a few weeks. I hope that's a long way down the road! I haven't specifically asked him what to expect beyond that because I just thought of in-hospital vs. out patient care yesterday.

As some of you may remember, Ellie was hospitalized at 2 weeks old with a cough as well as bilateral eye infections. We didn't have a definitive CF diagnosis (via newborn screening) but knew we were carriers. The doctors admitted her immediately out of concern that we were dealing with CF-related respiratory issues in light of us being carriers. Her lungs always sounded "clear" and she only cultured "normal" bacteria...so, I don't know if her stay at 2 weeks really counts as a "first" hospitalization in relation to CF. I honestly think she aspirated amniotic fluid upon delivery - a CF child showing symptoms at two weeks is virtually unheard of, from what I understand. Coupled with the green ocular discharge...I think she certainly had an infection, but I like to think it wasn't related to CF. Thoughts?

 

[kitomd21]

Thanks so much for all of your replies! I hope they keep coming! <img src="i/expressions/face-icon-small-tongue.gif" border="0"> Ellie hasn't cultured anything yet...I'm just wondering what we'll go through when that time does come. I know her doctor takes a laid back approach until she cultures something and then he wants her on IV meds for a few weeks. I hope that's a long way down the road! I haven't specifically asked him what to expect beyond that because I just thought of in-hospital vs. out patient care yesterday.

As some of you may remember, Ellie was hospitalized at 2 weeks old with a cough as well as bilateral eye infections. We didn't have a definitive CF diagnosis (via newborn screening) but knew we were carriers. The doctors admitted her immediately out of concern that we were dealing with CF-related respiratory issues in light of us being carriers. Her lungs always sounded "clear" and she only cultured "normal" bacteria...so, I don't know if her stay at 2 weeks really counts as a "first" hospitalization in relation to CF. I honestly think she aspirated amniotic fluid upon delivery - a CF child showing symptoms at two weeks is virtually unheard of, from what I understand. Coupled with the green ocular discharge...I think she certainly had an infection, but I like to think it wasn't related to CF. Thoughts?

 

[kitomd21]

Thanks so much for all of your replies! I hope they keep coming! <img src="i/expressions/face-icon-small-tongue.gif" border="0"> Ellie hasn't cultured anything yet...I'm just wondering what we'll go through when that time does come. I know her doctor takes a laid back approach until she cultures something and then he wants her on IV meds for a few weeks. I hope that's a long way down the road! I haven't specifically asked him what to expect beyond that because I just thought of in-hospital vs. out patient care yesterday.

As some of you may remember, Ellie was hospitalized at 2 weeks old with a cough as well as bilateral eye infections. We didn't have a definitive CF diagnosis (via newborn screening) but knew we were carriers. The doctors admitted her immediately out of concern that we were dealing with CF-related respiratory issues in light of us being carriers. Her lungs always sounded "clear" and she only cultured "normal" bacteria...so, I don't know if her stay at 2 weeks really counts as a "first" hospitalization in relation to CF. I honestly think she aspirated amniotic fluid upon delivery - a CF child showing symptoms at two weeks is virtually unheard of, from what I understand. Coupled with the green ocular discharge...I think she certainly had an infection, but I like to think it wasn't related to CF. Thoughts?

 

[kitomd21]

Thanks so much for all of your replies! I hope they keep coming! <img src="i/expressions/face-icon-small-tongue.gif" border="0"> Ellie hasn't cultured anything yet...I'm just wondering what we'll go through when that time does come. I know her doctor takes a laid back approach until she cultures something and then he wants her on IV meds for a few weeks. I hope that's a long way down the road! I haven't specifically asked him what to expect beyond that because I just thought of in-hospital vs. out patient care yesterday.
<br />
<br />As some of you may remember, Ellie was hospitalized at 2 weeks old with a cough as well as bilateral eye infections. We didn't have a definitive CF diagnosis (via newborn screening) but knew we were carriers. The doctors admitted her immediately out of concern that we were dealing with CF-related respiratory issues in light of us being carriers. Her lungs always sounded "clear" and she only cultured "normal" bacteria...so, I don't know if her stay at 2 weeks really counts as a "first" hospitalization in relation to CF. I honestly think she aspirated amniotic fluid upon delivery - a CF child showing symptoms at two weeks is virtually unheard of, from what I understand. Coupled with the green ocular discharge...I think she certainly had an infection, but I like to think it wasn't related to CF. Thoughts?

 

[Mommafirst]

Wow reading this is interesting -- and a little upsetting to me to realize that my daughter is among the youngest to have had IV abx.

She will be three next week and has had two hospitalizations for IV antibiotics. The first was when she was 14 months old. We were in-patient for 5 days and it might have been longer if we couldn't get the picc team to finally get the line in (took 2 days and 5 sticks). She Also just finished up a second round in October and again it was 5 days in, they let us go home once the PICC was in and her bronchitis started showing improvement.

We prefer not to stay in-patient that long. I definitely don't think the hospital is a good place to get rest and the RTs always leave CPT up to me and/or the vest, so really we can do it all at home, only better.

 

[Mommafirst]

Wow reading this is interesting -- and a little upsetting to me to realize that my daughter is among the youngest to have had IV abx.

She will be three next week and has had two hospitalizations for IV antibiotics. The first was when she was 14 months old. We were in-patient for 5 days and it might have been longer if we couldn't get the picc team to finally get the line in (took 2 days and 5 sticks). She Also just finished up a second round in October and again it was 5 days in, they let us go home once the PICC was in and her bronchitis started showing improvement.

We prefer not to stay in-patient that long. I definitely don't think the hospital is a good place to get rest and the RTs always leave CPT up to me and/or the vest, so really we can do it all at home, only better.

 

[Mommafirst]

Wow reading this is interesting -- and a little upsetting to me to realize that my daughter is among the youngest to have had IV abx.

She will be three next week and has had two hospitalizations for IV antibiotics. The first was when she was 14 months old. We were in-patient for 5 days and it might have been longer if we couldn't get the picc team to finally get the line in (took 2 days and 5 sticks). She Also just finished up a second round in October and again it was 5 days in, they let us go home once the PICC was in and her bronchitis started showing improvement.

We prefer not to stay in-patient that long. I definitely don't think the hospital is a good place to get rest and the RTs always leave CPT up to me and/or the vest, so really we can do it all at home, only better.

 

[Mommafirst]

Wow reading this is interesting -- and a little upsetting to me to realize that my daughter is among the youngest to have had IV abx.

She will be three next week and has had two hospitalizations for IV antibiotics. The first was when she was 14 months old. We were in-patient for 5 days and it might have been longer if we couldn't get the picc team to finally get the line in (took 2 days and 5 sticks). She Also just finished up a second round in October and again it was 5 days in, they let us go home once the PICC was in and her bronchitis started showing improvement.

We prefer not to stay in-patient that long. I definitely don't think the hospital is a good place to get rest and the RTs always leave CPT up to me and/or the vest, so really we can do it all at home, only better.

 

[Mommafirst]

Wow reading this is interesting -- and a little upsetting to me to realize that my daughter is among the youngest to have had IV abx.
<br />
<br />She will be three next week and has had two hospitalizations for IV antibiotics. The first was when she was 14 months old. We were in-patient for 5 days and it might have been longer if we couldn't get the picc team to finally get the line in (took 2 days and 5 sticks). She Also just finished up a second round in October and again it was 5 days in, they let us go home once the PICC was in and her bronchitis started showing improvement.
<br />
<br />We prefer not to stay in-patient that long. I definitely don't think the hospital is a good place to get rest and the RTs always leave CPT up to me and/or the vest, so really we can do it all at home, only better.

 

[NYCLawGirl]

Heather, don't be upset about the hospital stays. Your little girl is just getting the help she needs to live a long and healthy life.

Obviously CF is progressive, but Kristen is dead on about hospital stays not being the start of any definite downward spiral. Put it this way: growing up I was actually living next door to another CFer who is 2 months older than me, and later her younger sister who also has CF. She and her sister were hospitalized FAR more freuently than I was and seemed much more symptomatic at a young age. On the other hand, now that we're all in our 20s, I have the most severe respiratory issues by a long shot. The two girls (who I should add of course have the same mutations, being sisters) have other issues, sure, but both have pretty great PFTs. They still culture bacteria and get infections and do IVs -- in other words, they have CF symptoms and issues -- but they are both active, have careers and husbands, and are doing great lung wise.

Infections are bad news, of course, but not always the end of the world. That's espcially true when you demand and receive awesome care (inpatient or outpatient) to help nip the infection in the bud early.

 

[NYCLawGirl]

Heather, don't be upset about the hospital stays. Your little girl is just getting the help she needs to live a long and healthy life.

Obviously CF is progressive, but Kristen is dead on about hospital stays not being the start of any definite downward spiral. Put it this way: growing up I was actually living next door to another CFer who is 2 months older than me, and later her younger sister who also has CF. She and her sister were hospitalized FAR more freuently than I was and seemed much more symptomatic at a young age. On the other hand, now that we're all in our 20s, I have the most severe respiratory issues by a long shot. The two girls (who I should add of course have the same mutations, being sisters) have other issues, sure, but both have pretty great PFTs. They still culture bacteria and get infections and do IVs -- in other words, they have CF symptoms and issues -- but they are both active, have careers and husbands, and are doing great lung wise.

Infections are bad news, of course, but not always the end of the world. That's espcially true when you demand and receive awesome care (inpatient or outpatient) to help nip the infection in the bud early.

 

[NYCLawGirl]

Heather, don't be upset about the hospital stays. Your little girl is just getting the help she needs to live a long and healthy life.

Obviously CF is progressive, but Kristen is dead on about hospital stays not being the start of any definite downward spiral. Put it this way: growing up I was actually living next door to another CFer who is 2 months older than me, and later her younger sister who also has CF. She and her sister were hospitalized FAR more freuently than I was and seemed much more symptomatic at a young age. On the other hand, now that we're all in our 20s, I have the most severe respiratory issues by a long shot. The two girls (who I should add of course have the same mutations, being sisters) have other issues, sure, but both have pretty great PFTs. They still culture bacteria and get infections and do IVs -- in other words, they have CF symptoms and issues -- but they are both active, have careers and husbands, and are doing great lung wise.

Infections are bad news, of course, but not always the end of the world. That's espcially true when you demand and receive awesome care (inpatient or outpatient) to help nip the infection in the bud early.

 

[NYCLawGirl]

Heather, don't be upset about the hospital stays. Your little girl is just getting the help she needs to live a long and healthy life.

Obviously CF is progressive, but Kristen is dead on about hospital stays not being the start of any definite downward spiral. Put it this way: growing up I was actually living next door to another CFer who is 2 months older than me, and later her younger sister who also has CF. She and her sister were hospitalized FAR more freuently than I was and seemed much more symptomatic at a young age. On the other hand, now that we're all in our 20s, I have the most severe respiratory issues by a long shot. The two girls (who I should add of course have the same mutations, being sisters) have other issues, sure, but both have pretty great PFTs. They still culture bacteria and get infections and do IVs -- in other words, they have CF symptoms and issues -- but they are both active, have careers and husbands, and are doing great lung wise.

Infections are bad news, of course, but not always the end of the world. That's espcially true when you demand and receive awesome care (inpatient or outpatient) to help nip the infection in the bud early.

 

[NYCLawGirl]

Heather, don't be upset about the hospital stays. Your little girl is just getting the help she needs to live a long and healthy life.
<br />
<br />Obviously CF is progressive, but Kristen is dead on about hospital stays not being the start of any definite downward spiral. Put it this way: growing up I was actually living next door to another CFer who is 2 months older than me, and later her younger sister who also has CF. She and her sister were hospitalized FAR more freuently than I was and seemed much more symptomatic at a young age. On the other hand, now that we're all in our 20s, I have the most severe respiratory issues by a long shot. The two girls (who I should add of course have the same mutations, being sisters) have other issues, sure, but both have pretty great PFTs. They still culture bacteria and get infections and do IVs -- in other words, they have CF symptoms and issues -- but they are both active, have careers and husbands, and are doing great lung wise.
<br />
<br />Infections are bad news, of course, but not always the end of the world. That's espcially true when you demand and receive awesome care (inpatient or outpatient) to help nip the infection in the bud early.