Can I really handle all of this?

[marymomofallissa]

<img src="i/expressions/rose.gif" border="0"> Hello, my name is Mary Gabriel, I am a mom of 2 perfect children, Patrick is almost 4 and is a carrier, Allissa is 2 1/2 and has CF. The roller coaster we have been on since the day Allissa was born feels as if it is all being held together with a tiny string and is soo close to derailing. In CF it is always, I can handle anything except for.... and when that exception happens the bar is raised to the next thing. When Allissa came home from the hospital last month with PICC IV's I was freaked out (it was out first time on at home IV's) and to make it worse, I was told by her home health nurse to give TOBI 2 times a day we doubled her dose for 4 days until we ran out of meds and then we found out the error. It almost seems that since she was born we have to second guess the doctors and nurses every step of the way. In doing this we face retaliation. All of this seems like so much ontop of the daily list of meds and treatments. Does this ever get any easier? Are we doing the right thing in all of this? I feel so hopeless, like no matter what I do I can't save my baby girl from this pain, I lay awake all night and hear her cough and I cry<img src="i/expressions/brokenheart.gif" border="0">...... I want to run out with guns blaring and make the whole world hear her struggle to breathe, Make them feel just a fraction of this anguish and frustration, desperation, so maybe, just maybe they might care enough to help and get involved. I get so discouraged because both my family and husbands family see the best way to "deal" with Allissa and her CF is to act as if it doesn't exist. I wish they could just see it and feel it for just a second...... would they understand? I found my way to this site in total desperation to conect with somone that understands. Please tell me I am not crazy, is all of this normal?<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[marymomofallissa]

<img src="i/expressions/rose.gif" border="0"> Hello, my name is Mary Gabriel, I am a mom of 2 perfect children, Patrick is almost 4 and is a carrier, Allissa is 2 1/2 and has CF. The roller coaster we have been on since the day Allissa was born feels as if it is all being held together with a tiny string and is soo close to derailing. In CF it is always, I can handle anything except for.... and when that exception happens the bar is raised to the next thing. When Allissa came home from the hospital last month with PICC IV's I was freaked out (it was out first time on at home IV's) and to make it worse, I was told by her home health nurse to give TOBI 2 times a day we doubled her dose for 4 days until we ran out of meds and then we found out the error. It almost seems that since she was born we have to second guess the doctors and nurses every step of the way. In doing this we face retaliation. All of this seems like so much ontop of the daily list of meds and treatments. Does this ever get any easier? Are we doing the right thing in all of this? I feel so hopeless, like no matter what I do I can't save my baby girl from this pain, I lay awake all night and hear her cough and I cry<img src="i/expressions/brokenheart.gif" border="0">...... I want to run out with guns blaring and make the whole world hear her struggle to breathe, Make them feel just a fraction of this anguish and frustration, desperation, so maybe, just maybe they might care enough to help and get involved. I get so discouraged because both my family and husbands family see the best way to "deal" with Allissa and her CF is to act as if it doesn't exist. I wish they could just see it and feel it for just a second...... would they understand? I found my way to this site in total desperation to conect with somone that understands. Please tell me I am not crazy, is all of this normal?<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[marymomofallissa]

<img src="i/expressions/rose.gif" border="0"> Hello, my name is Mary Gabriel, I am a mom of 2 perfect children, Patrick is almost 4 and is a carrier, Allissa is 2 1/2 and has CF. The roller coaster we have been on since the day Allissa was born feels as if it is all being held together with a tiny string and is soo close to derailing. In CF it is always, I can handle anything except for.... and when that exception happens the bar is raised to the next thing. When Allissa came home from the hospital last month with PICC IV's I was freaked out (it was out first time on at home IV's) and to make it worse, I was told by her home health nurse to give TOBI 2 times a day we doubled her dose for 4 days until we ran out of meds and then we found out the error. It almost seems that since she was born we have to second guess the doctors and nurses every step of the way. In doing this we face retaliation. All of this seems like so much ontop of the daily list of meds and treatments. Does this ever get any easier? Are we doing the right thing in all of this? I feel so hopeless, like no matter what I do I can't save my baby girl from this pain, I lay awake all night and hear her cough and I cry<img src="i/expressions/brokenheart.gif" border="0">...... I want to run out with guns blaring and make the whole world hear her struggle to breathe, Make them feel just a fraction of this anguish and frustration, desperation, so maybe, just maybe they might care enough to help and get involved. I get so discouraged because both my family and husbands family see the best way to "deal" with Allissa and her CF is to act as if it doesn't exist. I wish they could just see it and feel it for just a second...... would they understand? I found my way to this site in total desperation to conect with somone that understands. Please tell me I am not crazy, is all of this normal?<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[JazzysMom]

It does get easier in the fact that things become more routine. The additional things during a flareup stir those unsure emotions again. The new things like home iv's or picc lines will throw you for a loop. I was devistated the first time I had to come home on iv's. It was an obvious sign to me that CF had too much influence on my life. It took awhile and I got use to it. The same thing when I needed O2. I thinks it normal and healthy in many ways to feel what you are. Having to question the medical profession can take its toll, but she is your child and when push comes to shove you are the one that will be there thru it all. Doctors/Nurses can come & go. So let them get angry when you ??? it....you need to be sure, feel comfortable and advocate for your daughter. Especiallly with each new thing that you encounter. Please know that the folks here are there to listen and answer your concerns......HUGS!

 

[JazzysMom]

It does get easier in the fact that things become more routine. The additional things during a flareup stir those unsure emotions again. The new things like home iv's or picc lines will throw you for a loop. I was devistated the first time I had to come home on iv's. It was an obvious sign to me that CF had too much influence on my life. It took awhile and I got use to it. The same thing when I needed O2. I thinks it normal and healthy in many ways to feel what you are. Having to question the medical profession can take its toll, but she is your child and when push comes to shove you are the one that will be there thru it all. Doctors/Nurses can come & go. So let them get angry when you ??? it....you need to be sure, feel comfortable and advocate for your daughter. Especiallly with each new thing that you encounter. Please know that the folks here are there to listen and answer your concerns......HUGS!

 

[JazzysMom]

It does get easier in the fact that things become more routine. The additional things during a flareup stir those unsure emotions again. The new things like home iv's or picc lines will throw you for a loop. I was devistated the first time I had to come home on iv's. It was an obvious sign to me that CF had too much influence on my life. It took awhile and I got use to it. The same thing when I needed O2. I thinks it normal and healthy in many ways to feel what you are. Having to question the medical profession can take its toll, but she is your child and when push comes to shove you are the one that will be there thru it all. Doctors/Nurses can come & go. So let them get angry when you ??? it....you need to be sure, feel comfortable and advocate for your daughter. Especiallly with each new thing that you encounter. Please know that the folks here are there to listen and answer your concerns......HUGS!

 

[marymomofallissa]

Thank you so much for your reassurance, it really does help. Allissa is only 2 and has been in the hospital for more than 1/3 of her life she is the (or so I have been told) youngest to have pancreatitis (diagnosed at 2 weeks) she just recently (since October) has had pulminary problems, she cultured with PA and just can't shake this sickness, it really breaks my heart, Is all of this normal for such a young child with CF? Does this bid badly for her future? I ask these questions in clinic, but no one ever wants to give a staright amswer, i am pretty tired of generic "well everyone is different" Thank you again, it really does help to know there are other people out there that "get it"

 

[marymomofallissa]

Thank you so much for your reassurance, it really does help. Allissa is only 2 and has been in the hospital for more than 1/3 of her life she is the (or so I have been told) youngest to have pancreatitis (diagnosed at 2 weeks) she just recently (since October) has had pulminary problems, she cultured with PA and just can't shake this sickness, it really breaks my heart, Is all of this normal for such a young child with CF? Does this bid badly for her future? I ask these questions in clinic, but no one ever wants to give a staright amswer, i am pretty tired of generic "well everyone is different" Thank you again, it really does help to know there are other people out there that "get it"

 

[marymomofallissa]

Thank you so much for your reassurance, it really does help. Allissa is only 2 and has been in the hospital for more than 1/3 of her life she is the (or so I have been told) youngest to have pancreatitis (diagnosed at 2 weeks) she just recently (since October) has had pulminary problems, she cultured with PA and just can't shake this sickness, it really breaks my heart, Is all of this normal for such a young child with CF? Does this bid badly for her future? I ask these questions in clinic, but no one ever wants to give a staright amswer, i am pretty tired of generic "well everyone is different" Thank you again, it really does help to know there are other people out there that "get it"

 

[eli]

Hi Mary, i'm sorry that you and your family are having to go through this so early into her diagnosis. Its not somthing abnormal, its just a part of Cf and it hits people at different stages in their life.

She may be this way now, but may also shake it and then stay well for a long period of time. Its hard to say, i guess that's why the docs can't give you a straight answer. They themselves don't know, as each case is so different.

I do know how you feel, i too have a 2 yr old daughter with CF and YES the blow was Big when we found out and has only just bagan to lesson. I think its just somthing we have to learn to cope and deal with, i'm hoping it will only make us stronger. As it has already made us appreciate the most little things in life.

I hope things start to lighten up for all of you, and i am here to chat anytime you like. Please PM me <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care

 

[eli]

Hi Mary, i'm sorry that you and your family are having to go through this so early into her diagnosis. Its not somthing abnormal, its just a part of Cf and it hits people at different stages in their life.

She may be this way now, but may also shake it and then stay well for a long period of time. Its hard to say, i guess that's why the docs can't give you a straight answer. They themselves don't know, as each case is so different.

I do know how you feel, i too have a 2 yr old daughter with CF and YES the blow was Big when we found out and has only just bagan to lesson. I think its just somthing we have to learn to cope and deal with, i'm hoping it will only make us stronger. As it has already made us appreciate the most little things in life.

I hope things start to lighten up for all of you, and i am here to chat anytime you like. Please PM me <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care

 

[eli]

Hi Mary, i'm sorry that you and your family are having to go through this so early into her diagnosis. Its not somthing abnormal, its just a part of Cf and it hits people at different stages in their life.

She may be this way now, but may also shake it and then stay well for a long period of time. Its hard to say, i guess that's why the docs can't give you a straight answer. They themselves don't know, as each case is so different.

I do know how you feel, i too have a 2 yr old daughter with CF and YES the blow was Big when we found out and has only just bagan to lesson. I think its just somthing we have to learn to cope and deal with, i'm hoping it will only make us stronger. As it has already made us appreciate the most little things in life.

I hope things start to lighten up for all of you, and i am here to chat anytime you like. Please PM me <img src="i/expressions/face-icon-small-smile.gif" border="0">

Take care

 

[Ratatosk]

I know the feeling about having to second guess doctors. My husband always reminding me that "we're the customer" usually it's after I complain "we have to PAY for this abuse? Is there anywhere else you can go for a second opinion?

I get bummed every time a new drug or treatment is added. It took me almost a YEAR to get used to DS being on zithromax -- and that's just once a day. Month he's on tobi, seems like we're always rushing around, trying to get things done in the evenings. But early on I've had the attitude of, what choice do we have? -- pretty much my "suck it up princess" talk to myself. This is usually after I have a meltdown -- one of those "life isn't fair" sorta crying jags. And then I pick myself up, brush myself off and try to get on with things.

Hopefully things will start improving and you'll be able to enjoy your little girl and not have to worry so much.

 

[Ratatosk]

I know the feeling about having to second guess doctors. My husband always reminding me that "we're the customer" usually it's after I complain "we have to PAY for this abuse? Is there anywhere else you can go for a second opinion?

I get bummed every time a new drug or treatment is added. It took me almost a YEAR to get used to DS being on zithromax -- and that's just once a day. Month he's on tobi, seems like we're always rushing around, trying to get things done in the evenings. But early on I've had the attitude of, what choice do we have? -- pretty much my "suck it up princess" talk to myself. This is usually after I have a meltdown -- one of those "life isn't fair" sorta crying jags. And then I pick myself up, brush myself off and try to get on with things.

Hopefully things will start improving and you'll be able to enjoy your little girl and not have to worry so much.

 

[Ratatosk]

I know the feeling about having to second guess doctors. My husband always reminding me that "we're the customer" usually it's after I complain "we have to PAY for this abuse? Is there anywhere else you can go for a second opinion?

I get bummed every time a new drug or treatment is added. It took me almost a YEAR to get used to DS being on zithromax -- and that's just once a day. Month he's on tobi, seems like we're always rushing around, trying to get things done in the evenings. But early on I've had the attitude of, what choice do we have? -- pretty much my "suck it up princess" talk to myself. This is usually after I have a meltdown -- one of those "life isn't fair" sorta crying jags. And then I pick myself up, brush myself off and try to get on with things.

Hopefully things will start improving and you'll be able to enjoy your little girl and not have to worry so much.

 

[tammykrumrey]

Mary,

Like Melissa said, it does become more routine, so in that sense it gets easier. There are always going to be bumps in the road, when CF reminds you that it is still there, trying to take control. I really feel like it is a roller coaster ride. Treatments, meds, they all just have become what is normal for us.

There are some who have a lot of challenges when young, but do better as they get older. Just keep doing what needs to be done to keep her as healthy as possible. Research things about what she cultures, the meds that they put her on, etc. Then ask her CF doc about what you have learned. I do that all the time with my girls. I have no problem saying, 'hey, I read this...' I like to come to this forum because I can search my questions, and find that it has usually been discussed at some point in time, but maybe it was not an issue for me when it was being discussed, but now it is. I can ask questions to the others here as well when needed. I keep myself educated, and to be honest, it has made me much stronger about all of this than more nervous. And in your case, it may be even more important to do if your family isn't there for you. That makes me sad for you.

Remember, most people on these forums have been there, and will be willing to help you and support you, even if your family doesn't understand what you are going through.

Your daughter is a real cutie!

 

[tammykrumrey]

Mary,

Like Melissa said, it does become more routine, so in that sense it gets easier. There are always going to be bumps in the road, when CF reminds you that it is still there, trying to take control. I really feel like it is a roller coaster ride. Treatments, meds, they all just have become what is normal for us.

There are some who have a lot of challenges when young, but do better as they get older. Just keep doing what needs to be done to keep her as healthy as possible. Research things about what she cultures, the meds that they put her on, etc. Then ask her CF doc about what you have learned. I do that all the time with my girls. I have no problem saying, 'hey, I read this...' I like to come to this forum because I can search my questions, and find that it has usually been discussed at some point in time, but maybe it was not an issue for me when it was being discussed, but now it is. I can ask questions to the others here as well when needed. I keep myself educated, and to be honest, it has made me much stronger about all of this than more nervous. And in your case, it may be even more important to do if your family isn't there for you. That makes me sad for you.

Remember, most people on these forums have been there, and will be willing to help you and support you, even if your family doesn't understand what you are going through.

Your daughter is a real cutie!

 

[tammykrumrey]

Mary,

Like Melissa said, it does become more routine, so in that sense it gets easier. There are always going to be bumps in the road, when CF reminds you that it is still there, trying to take control. I really feel like it is a roller coaster ride. Treatments, meds, they all just have become what is normal for us.

There are some who have a lot of challenges when young, but do better as they get older. Just keep doing what needs to be done to keep her as healthy as possible. Research things about what she cultures, the meds that they put her on, etc. Then ask her CF doc about what you have learned. I do that all the time with my girls. I have no problem saying, 'hey, I read this...' I like to come to this forum because I can search my questions, and find that it has usually been discussed at some point in time, but maybe it was not an issue for me when it was being discussed, but now it is. I can ask questions to the others here as well when needed. I keep myself educated, and to be honest, it has made me much stronger about all of this than more nervous. And in your case, it may be even more important to do if your family isn't there for you. That makes me sad for you.

Remember, most people on these forums have been there, and will be willing to help you and support you, even if your family doesn't understand what you are going through.

Your daughter is a real cutie!

 

[mneville]

Mary- It is hard but yes you can handle it! You have to for that little girl of yours- she is a cutie! Our son Aidan is two and a half and was diagnosed through newborn screening. He is a Double Delta. It was horrible in the beginning and the first time he went on IVs and a PICC, I cried the whole time the nurse was explaining how to run the antibiotics. It was awful. I learned to take one day at a time. Aidan has been very healthy since his first PICC which was just for sinus disease. So I tend to be overly optimistic, I know it must be so much harder when you've been through so much more.

Do not despair though. I have heard of many CFers who have a really hard start but then go through years of health with no complications. Winters are the roughest and we try to shelter Aidan as much as possible during these months. You can get rid of the PA though- be aggressive and assertive in her treatments. She will rebound, these CFers are strong!

Megan

 

[mneville]

Mary- It is hard but yes you can handle it! You have to for that little girl of yours- she is a cutie! Our son Aidan is two and a half and was diagnosed through newborn screening. He is a Double Delta. It was horrible in the beginning and the first time he went on IVs and a PICC, I cried the whole time the nurse was explaining how to run the antibiotics. It was awful. I learned to take one day at a time. Aidan has been very healthy since his first PICC which was just for sinus disease. So I tend to be overly optimistic, I know it must be so much harder when you've been through so much more.

Do not despair though. I have heard of many CFers who have a really hard start but then go through years of health with no complications. Winters are the roughest and we try to shelter Aidan as much as possible during these months. You can get rid of the PA though- be aggressive and assertive in her treatments. She will rebound, these CFers are strong!

Megan