WORRIED

[DREAMPEBBLE]

HI,I am Shelia, mother of Kristopher 2years just dignosed with cf in may. IT was tottaly unexpected dignoses i new nothing about it i was really scared and still am cause iam still learning about the dignosis. Hes been sick since he was a month old, (his cf test was negitve at birth)hes had cronic lung infections hes been hospitalize moretimes than i can count on my fingers. Well since dignosis in may hes still battling the infections he hasnt been well since the 2 week hospital stay in may he keeps gettin staph and struemonis(not spelled right0 he cant get oer it hes been on cipro, bactrum and in toby sinces hes been out ad he seems to just be getting worse hes there possible about to put him in for a 2 week ivs. iam so concerned for him cause he also has the the pancreiuos problem so he doesnt digest foods right hes not gaining weight right there talking bout putting him on a feeding tube at night to help with that...i have to chace himaround with a spoon full of applesause to try and get his enyzmes in him...which he sometimes hates to take...plus hes on the nebs which he was already on but hes on toby untill his culture comes back neg for strudimonious.(not spelled right) he takes pulmizine twice a day, abutral at least 4 times a day pulmicort has been changed to once at night milgrams just upped, toby twice plus oral antibiotices and plus he takes his shake shake machine 2 times a day sometimes three if hes got a really croupy chough like right now....it was just som much at one time and iam a single mom i have a daughter thats 5 that doesnt have cf but she has add and adhd....and doesnt understand how sick her brother is and its hard to explain to her about everything, iam glad theres a cite that i can talk with others about everything thats going on...also my son just had a broscoptimy and found he already has several spots of dead tissues in is lungs. with all his infections i know each one deteriates his lings more and with hi not being able to keep infection free iam worried that hes at a higher chance of having to have a lung trasplaint do to lung failur....well typing this helped relieve some stress it helps to talk bout it..

 

[DREAMPEBBLE]

HI,I am Shelia, mother of Kristopher 2years just dignosed with cf in may. IT was tottaly unexpected dignoses i new nothing about it i was really scared and still am cause iam still learning about the dignosis. Hes been sick since he was a month old, (his cf test was negitve at birth)hes had cronic lung infections hes been hospitalize moretimes than i can count on my fingers. Well since dignosis in may hes still battling the infections he hasnt been well since the 2 week hospital stay in may he keeps gettin staph and struemonis(not spelled right0 he cant get oer it hes been on cipro, bactrum and in toby sinces hes been out ad he seems to just be getting worse hes there possible about to put him in for a 2 week ivs. iam so concerned for him cause he also has the the pancreiuos problem so he doesnt digest foods right hes not gaining weight right there talking bout putting him on a feeding tube at night to help with that...i have to chace himaround with a spoon full of applesause to try and get his enyzmes in him...which he sometimes hates to take...plus hes on the nebs which he was already on but hes on toby untill his culture comes back neg for strudimonious.(not spelled right) he takes pulmizine twice a day, abutral at least 4 times a day pulmicort has been changed to once at night milgrams just upped, toby twice plus oral antibiotices and plus he takes his shake shake machine 2 times a day sometimes three if hes got a really croupy chough like right now....it was just som much at one time and iam a single mom i have a daughter thats 5 that doesnt have cf but she has add and adhd....and doesnt understand how sick her brother is and its hard to explain to her about everything, iam glad theres a cite that i can talk with others about everything thats going on...also my son just had a broscoptimy and found he already has several spots of dead tissues in is lungs. with all his infections i know each one deteriates his lings more and with hi not being able to keep infection free iam worried that hes at a higher chance of having to have a lung trasplaint do to lung failur....well typing this helped relieve some stress it helps to talk bout it..

 

[DREAMPEBBLE]

HI,I am Shelia, mother of Kristopher 2years just dignosed with cf in may. IT was tottaly unexpected dignoses i new nothing about it i was really scared and still am cause iam still learning about the dignosis. Hes been sick since he was a month old, (his cf test was negitve at birth)hes had cronic lung infections hes been hospitalize moretimes than i can count on my fingers. Well since dignosis in may hes still battling the infections he hasnt been well since the 2 week hospital stay in may he keeps gettin staph and struemonis(not spelled right0 he cant get oer it hes been on cipro, bactrum and in toby sinces hes been out ad he seems to just be getting worse hes there possible about to put him in for a 2 week ivs. iam so concerned for him cause he also has the the pancreiuos problem so he doesnt digest foods right hes not gaining weight right there talking bout putting him on a feeding tube at night to help with that...i have to chace himaround with a spoon full of applesause to try and get his enyzmes in him...which he sometimes hates to take...plus hes on the nebs which he was already on but hes on toby untill his culture comes back neg for strudimonious.(not spelled right) he takes pulmizine twice a day, abutral at least 4 times a day pulmicort has been changed to once at night milgrams just upped, toby twice plus oral antibiotices and plus he takes his shake shake machine 2 times a day sometimes three if hes got a really croupy chough like right now....it was just som much at one time and iam a single mom i have a daughter thats 5 that doesnt have cf but she has add and adhd....and doesnt understand how sick her brother is and its hard to explain to her about everything, iam glad theres a cite that i can talk with others about everything thats going on...also my son just had a broscoptimy and found he already has several spots of dead tissues in is lungs. with all his infections i know each one deteriates his lings more and with hi not being able to keep infection free iam worried that hes at a higher chance of having to have a lung trasplaint do to lung failur....well typing this helped relieve some stress it helps to talk bout it..

 

[DREAMPEBBLE]

HI,I am Shelia, mother of Kristopher 2years just dignosed with cf in may. IT was tottaly unexpected dignoses i new nothing about it i was really scared and still am cause iam still learning about the dignosis. Hes been sick since he was a month old, (his cf test was negitve at birth)hes had cronic lung infections hes been hospitalize moretimes than i can count on my fingers. Well since dignosis in may hes still battling the infections he hasnt been well since the 2 week hospital stay in may he keeps gettin staph and struemonis(not spelled right0 he cant get oer it hes been on cipro, bactrum and in toby sinces hes been out ad he seems to just be getting worse hes there possible about to put him in for a 2 week ivs. iam so concerned for him cause he also has the the pancreiuos problem so he doesnt digest foods right hes not gaining weight right there talking bout putting him on a feeding tube at night to help with that...i have to chace himaround with a spoon full of applesause to try and get his enyzmes in him...which he sometimes hates to take...plus hes on the nebs which he was already on but hes on toby untill his culture comes back neg for strudimonious.(not spelled right) he takes pulmizine twice a day, abutral at least 4 times a day pulmicort has been changed to once at night milgrams just upped, toby twice plus oral antibiotices and plus he takes his shake shake machine 2 times a day sometimes three if hes got a really croupy chough like right now....it was just som much at one time and iam a single mom i have a daughter thats 5 that doesnt have cf but she has add and adhd....and doesnt understand how sick her brother is and its hard to explain to her about everything, iam glad theres a cite that i can talk with others about everything thats going on...also my son just had a broscoptimy and found he already has several spots of dead tissues in is lungs. with all his infections i know each one deteriates his lings more and with hi not being able to keep infection free iam worried that hes at a higher chance of having to have a lung trasplaint do to lung failur....well typing this helped relieve some stress it helps to talk bout it..

 

[DREAMPEBBLE]

HI,I am Shelia, mother of Kristopher 2years just dignosed with cf in may. IT was tottaly unexpected dignoses i new nothing about it i was really scared and still am cause iam still learning about the dignosis. Hes been sick since he was a month old, (his cf test was negitve at birth)hes had cronic lung infections hes been hospitalize moretimes than i can count on my fingers. Well since dignosis in may hes still battling the infections he hasnt been well since the 2 week hospital stay in may he keeps gettin staph and struemonis(not spelled right0 he cant get oer it hes been on cipro, bactrum and in toby sinces hes been out ad he seems to just be getting worse hes there possible about to put him in for a 2 week ivs. iam so concerned for him cause he also has the the pancreiuos problem so he doesnt digest foods right hes not gaining weight right there talking bout putting him on a feeding tube at night to help with that...i have to chace himaround with a spoon full of applesause to try and get his enyzmes in him...which he sometimes hates to take...plus hes on the nebs which he was already on but hes on toby untill his culture comes back neg for strudimonious.(not spelled right) he takes pulmizine twice a day, abutral at least 4 times a day pulmicort has been changed to once at night milgrams just upped, toby twice plus oral antibiotices and plus he takes his shake shake machine 2 times a day sometimes three if hes got a really croupy chough like right now....it was just som much at one time and iam a single mom i have a daughter thats 5 that doesnt have cf but she has add and adhd....and doesnt understand how sick her brother is and its hard to explain to her about everything, iam glad theres a cite that i can talk with others about everything thats going on...also my son just had a broscoptimy and found he already has several spots of dead tissues in is lungs. with all his infections i know each one deteriates his lings more and with hi not being able to keep infection free iam worried that hes at a higher chance of having to have a lung trasplaint do to lung failur....well typing this helped relieve some stress it helps to talk bout it..

 

[Mommafirst]

Hi Shiela!

I know this is sooo overwhelming, and even more so when you get two years worth of information overnight. But take a deep breath. This is a marathon, not a sprint.

My daughter is currently on IVs and also has a feeding tube. these are the things that help make her soooo much better and gives her a better shot at fighting CF. As overwhelming and sad as it can all be, eventually you adapt. I know it seems impossible, but you do. I hate CF, but my daughter is as normal to me as my boys without CF. She can now take her enzymes whole, helps set up her feeding tube at night, and actually had some fun int he hospital.

(((HUGS))) Hang in there and welcome to the site.

 

[Mommafirst]

Hi Shiela!

I know this is sooo overwhelming, and even more so when you get two years worth of information overnight. But take a deep breath. This is a marathon, not a sprint.

My daughter is currently on IVs and also has a feeding tube. these are the things that help make her soooo much better and gives her a better shot at fighting CF. As overwhelming and sad as it can all be, eventually you adapt. I know it seems impossible, but you do. I hate CF, but my daughter is as normal to me as my boys without CF. She can now take her enzymes whole, helps set up her feeding tube at night, and actually had some fun int he hospital.

(((HUGS))) Hang in there and welcome to the site.

 

[Mommafirst]

Hi Shiela!

I know this is sooo overwhelming, and even more so when you get two years worth of information overnight. But take a deep breath. This is a marathon, not a sprint.

My daughter is currently on IVs and also has a feeding tube. these are the things that help make her soooo much better and gives her a better shot at fighting CF. As overwhelming and sad as it can all be, eventually you adapt. I know it seems impossible, but you do. I hate CF, but my daughter is as normal to me as my boys without CF. She can now take her enzymes whole, helps set up her feeding tube at night, and actually had some fun int he hospital.

(((HUGS))) Hang in there and welcome to the site.

 

[Mommafirst]

Hi Shiela!

I know this is sooo overwhelming, and even more so when you get two years worth of information overnight. But take a deep breath. This is a marathon, not a sprint.

My daughter is currently on IVs and also has a feeding tube. these are the things that help make her soooo much better and gives her a better shot at fighting CF. As overwhelming and sad as it can all be, eventually you adapt. I know it seems impossible, but you do. I hate CF, but my daughter is as normal to me as my boys without CF. She can now take her enzymes whole, helps set up her feeding tube at night, and actually had some fun int he hospital.

(((HUGS))) Hang in there and welcome to the site.

 

[Mommafirst]

Hi Shiela!
<br />
<br />I know this is sooo overwhelming, and even more so when you get two years worth of information overnight. But take a deep breath. This is a marathon, not a sprint.
<br />
<br />My daughter is currently on IVs and also has a feeding tube. these are the things that help make her soooo much better and gives her a better shot at fighting CF. As overwhelming and sad as it can all be, eventually you adapt. I know it seems impossible, but you do. I hate CF, but my daughter is as normal to me as my boys without CF. She can now take her enzymes whole, helps set up her feeding tube at night, and actually had some fun int he hospital.
<br />
<br />(((HUGS))) Hang in there and welcome to the site.

 

[saveferris2009]

I'd love to read what you wrote but it's so difficult without paragraphs <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[saveferris2009]

I'd love to read what you wrote but it's so difficult without paragraphs <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[saveferris2009]

I'd love to read what you wrote but it's so difficult without paragraphs <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[saveferris2009]

I'd love to read what you wrote but it's so difficult without paragraphs <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[saveferris2009]

I'd love to read what you wrote but it's so difficult without paragraphs <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />

 

[izemmom]

Hi Shiela!

I just wanted to welcome you and agree with what Heather wrote. It is so overwhelming at first. But, you will adjust and adapt. With each new thing you learn your confidence to deal with it all will grow. You've found a good resource here, so feel free to come and visit often and ask any questions you have.

I have a daughter who is 3 with CF, and a 6 year old who does not. I understand how hard it is to help the older one understand.

Each day, do the best you can do, and rest comfortably knowing you've done all you can. Please know you're not alone in this - we're all here, going through it, too!

Welcome!

 

[izemmom]

Hi Shiela!

I just wanted to welcome you and agree with what Heather wrote. It is so overwhelming at first. But, you will adjust and adapt. With each new thing you learn your confidence to deal with it all will grow. You've found a good resource here, so feel free to come and visit often and ask any questions you have.

I have a daughter who is 3 with CF, and a 6 year old who does not. I understand how hard it is to help the older one understand.

Each day, do the best you can do, and rest comfortably knowing you've done all you can. Please know you're not alone in this - we're all here, going through it, too!

Welcome!

 

[izemmom]

Hi Shiela!

I just wanted to welcome you and agree with what Heather wrote. It is so overwhelming at first. But, you will adjust and adapt. With each new thing you learn your confidence to deal with it all will grow. You've found a good resource here, so feel free to come and visit often and ask any questions you have.

I have a daughter who is 3 with CF, and a 6 year old who does not. I understand how hard it is to help the older one understand.

Each day, do the best you can do, and rest comfortably knowing you've done all you can. Please know you're not alone in this - we're all here, going through it, too!

Welcome!

 

[izemmom]

Hi Shiela!

I just wanted to welcome you and agree with what Heather wrote. It is so overwhelming at first. But, you will adjust and adapt. With each new thing you learn your confidence to deal with it all will grow. You've found a good resource here, so feel free to come and visit often and ask any questions you have.

I have a daughter who is 3 with CF, and a 6 year old who does not. I understand how hard it is to help the older one understand.

Each day, do the best you can do, and rest comfortably knowing you've done all you can. Please know you're not alone in this - we're all here, going through it, too!

Welcome!

 

[izemmom]

Hi Shiela!
<br />
<br />I just wanted to welcome you and agree with what Heather wrote. It is so overwhelming at first. But, you will adjust and adapt. With each new thing you learn your confidence to deal with it all will grow. You've found a good resource here, so feel free to come and visit often and ask any questions you have.
<br />
<br />I have a daughter who is 3 with CF, and a 6 year old who does not. I understand how hard it is to help the older one understand.
<br />
<br />Each day, do the best you can do, and rest comfortably knowing you've done all you can. Please know you're not alone in this - we're all here, going through it, too!
<br />
<br />Welcome!