Can I really handle all of this?

[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

 

[DEES4]

The answer is yes....you can handle all of this even though I know sometimes it feels as if the world is caving in on you. I have a 3 year old son diagnosed with cf at 2 weeks old (I also have 3 other children without cf). When my son was 11 months old he got really sick and was in ICU on a vent and a medically induced coma....he stayed that way for a little more than a week and was in the hospital for 16 days. Of course I was told that it was not very common for a child with cf to get that sick and need that much medical intervention that early on. When he was so sick with all that junk in his lungs I thought like you....what did this mean for his future?...would he be able to fully regain good lung function?....would he keep getting sick like this all of the time? Well the answer is he is now 3 years old and doing great. He does not get sick alot and stays for the most part healthy.

I know how hard it is and how overwhelming it all can seem.....trust me I still have my days! Just know that the people here do get it and we understand just what you are going through. Sometimes just knowing you are not alone in this world and there are others like you out there just seems to help. I hope and pray that your daughter is back to feeling great really soon....hang in there!
Carrie

 

[DEES4]

The answer is yes....you can handle all of this even though I know sometimes it feels as if the world is caving in on you. I have a 3 year old son diagnosed with cf at 2 weeks old (I also have 3 other children without cf). When my son was 11 months old he got really sick and was in ICU on a vent and a medically induced coma....he stayed that way for a little more than a week and was in the hospital for 16 days. Of course I was told that it was not very common for a child with cf to get that sick and need that much medical intervention that early on. When he was so sick with all that junk in his lungs I thought like you....what did this mean for his future?...would he be able to fully regain good lung function?....would he keep getting sick like this all of the time? Well the answer is he is now 3 years old and doing great. He does not get sick alot and stays for the most part healthy.

I know how hard it is and how overwhelming it all can seem.....trust me I still have my days! Just know that the people here do get it and we understand just what you are going through. Sometimes just knowing you are not alone in this world and there are others like you out there just seems to help. I hope and pray that your daughter is back to feeling great really soon....hang in there!
Carrie

 

[DEES4]

The answer is yes....you can handle all of this even though I know sometimes it feels as if the world is caving in on you. I have a 3 year old son diagnosed with cf at 2 weeks old (I also have 3 other children without cf). When my son was 11 months old he got really sick and was in ICU on a vent and a medically induced coma....he stayed that way for a little more than a week and was in the hospital for 16 days. Of course I was told that it was not very common for a child with cf to get that sick and need that much medical intervention that early on. When he was so sick with all that junk in his lungs I thought like you....what did this mean for his future?...would he be able to fully regain good lung function?....would he keep getting sick like this all of the time? Well the answer is he is now 3 years old and doing great. He does not get sick alot and stays for the most part healthy.

I know how hard it is and how overwhelming it all can seem.....trust me I still have my days! Just know that the people here do get it and we understand just what you are going through. Sometimes just knowing you are not alone in this world and there are others like you out there just seems to help. I hope and pray that your daughter is back to feeling great really soon....hang in there!
Carrie

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>marymomofallissa</b></i>

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. </end quote></div>


You have to question your doctors. You <b> MUST </b>.

If you're facing retaliation from them for doing that, though, you need to find new physicians. That's just not OK and there are plenty of docs out there who will be open to any patient who are willing to be involved in their healthcare.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>marymomofallissa</b></i>

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. </end quote></div>


You have to question your doctors. You <b> MUST </b>.

If you're facing retaliation from them for doing that, though, you need to find new physicians. That's just not OK and there are plenty of docs out there who will be open to any patient who are willing to be involved in their healthcare.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>marymomofallissa</b></i>

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. </end quote></div>


You have to question your doctors. You <b> MUST </b>.

If you're facing retaliation from them for doing that, though, you need to find new physicians. That's just not OK and there are plenty of docs out there who will be open to any patient who are willing to be involved in their healthcare.

 

[NoExcuses]

One other thing I would like to add is that there is another way to think about this disease and all the meds that we have to do - at least we have access to the meds.

Talk to some posters on here that are from Syria, Croatia, Mexico, etc. They would do <b> ANYTHING </b> to have access to the meds that we have here (US, Canada, Western Europe, Australia, NZ). They don't even have a choice - they don't have access to meds.

So we are fortunate to be able to use these meds - even though it may take time out of our day.

 

[NoExcuses]

One other thing I would like to add is that there is another way to think about this disease and all the meds that we have to do - at least we have access to the meds.

Talk to some posters on here that are from Syria, Croatia, Mexico, etc. They would do <b> ANYTHING </b> to have access to the meds that we have here (US, Canada, Western Europe, Australia, NZ). They don't even have a choice - they don't have access to meds.

So we are fortunate to be able to use these meds - even though it may take time out of our day.

 

[NoExcuses]

One other thing I would like to add is that there is another way to think about this disease and all the meds that we have to do - at least we have access to the meds.

Talk to some posters on here that are from Syria, Croatia, Mexico, etc. They would do <b> ANYTHING </b> to have access to the meds that we have here (US, Canada, Western Europe, Australia, NZ). They don't even have a choice - they don't have access to meds.

So we are fortunate to be able to use these meds - even though it may take time out of our day.

 

[folione]

Hang in there. My boy w/CF is 4 and we've also been through some rough and confusing periods with his doctors. I've learned to be pretty demanding even though it's not my nature - but a couple unpleasant experiences that made my boy really upset were enough for me to buck up and realize that I have to stand up for him whatever it takes. Getting crystal clear information from medical personnel can be really hard sometimes, but I've become completely unafraid to make them sit still and go over my questions until I'm absolutely certain I understand something. I especially make sure I put them through the mill whenever they want to prescribe a new medicine or treatment or test to make sure it is actually going to solve some problem he is having...

My spouse is not comfortable being as aggressive with questions as I am, so we tag-team the doctors at clinic visits; if I can't make it (which is happening even as I write this) I call the clinic later if my spouse says something left her uncomfortable or uncertain.

As for coping with all the stuff involved in managing CF, I think we all have to find that wierd mental space that works for us - and what works one day might not work the next. Being resilient about lifes low points takes practice - and often a silent shoulder to weep into.

 

[folione]

Hang in there. My boy w/CF is 4 and we've also been through some rough and confusing periods with his doctors. I've learned to be pretty demanding even though it's not my nature - but a couple unpleasant experiences that made my boy really upset were enough for me to buck up and realize that I have to stand up for him whatever it takes. Getting crystal clear information from medical personnel can be really hard sometimes, but I've become completely unafraid to make them sit still and go over my questions until I'm absolutely certain I understand something. I especially make sure I put them through the mill whenever they want to prescribe a new medicine or treatment or test to make sure it is actually going to solve some problem he is having...

My spouse is not comfortable being as aggressive with questions as I am, so we tag-team the doctors at clinic visits; if I can't make it (which is happening even as I write this) I call the clinic later if my spouse says something left her uncomfortable or uncertain.

As for coping with all the stuff involved in managing CF, I think we all have to find that wierd mental space that works for us - and what works one day might not work the next. Being resilient about lifes low points takes practice - and often a silent shoulder to weep into.

 

[folione]

Hang in there. My boy w/CF is 4 and we've also been through some rough and confusing periods with his doctors. I've learned to be pretty demanding even though it's not my nature - but a couple unpleasant experiences that made my boy really upset were enough for me to buck up and realize that I have to stand up for him whatever it takes. Getting crystal clear information from medical personnel can be really hard sometimes, but I've become completely unafraid to make them sit still and go over my questions until I'm absolutely certain I understand something. I especially make sure I put them through the mill whenever they want to prescribe a new medicine or treatment or test to make sure it is actually going to solve some problem he is having...

My spouse is not comfortable being as aggressive with questions as I am, so we tag-team the doctors at clinic visits; if I can't make it (which is happening even as I write this) I call the clinic later if my spouse says something left her uncomfortable or uncertain.

As for coping with all the stuff involved in managing CF, I think we all have to find that wierd mental space that works for us - and what works one day might not work the next. Being resilient about lifes low points takes practice - and often a silent shoulder to weep into.

 

[kayleesgrandma]

Mary, read westonsmom's bog, her story of weston will help you I think. There is also Mom2RT. There are lots of other's here who are sharing your pain. You've fond a good place to vent, we've got big shoulders here. <img src="i/expressions/heart.gif" border="0">

 

[kayleesgrandma]

Mary, read westonsmom's bog, her story of weston will help you I think. There is also Mom2RT. There are lots of other's here who are sharing your pain. You've fond a good place to vent, we've got big shoulders here. <img src="i/expressions/heart.gif" border="0">

 

[kayleesgrandma]

Mary, read westonsmom's bog, her story of weston will help you I think. There is also Mom2RT. There are lots of other's here who are sharing your pain. You've fond a good place to vent, we've got big shoulders here. <img src="i/expressions/heart.gif" border="0">

 

[Foody]

Our son Ben is 2 1/2 as well. His first year of life was the hardest time of our lives (3 hospitalizations, home care after 2 of them, doctors which needed to be trained how to treat my family ;-). Too much to bare almost. It affected us very deeply and asked more than I thought I was capable of doing. But I did do it and so are you! You love your daughter and you will always do your best for her.

We had to set our doctors straight many a time and fight for what we feel is critical to his care. They are, for the most part, understanding and flexible. If this were not true I would not be including the on MY MEDICICAL TEAM for MY CHILD. Do you see, they are my resource when I need to decide what I would like to do for my child. There are other professionals in which I look to outside the clinic as well. I also expect myself to be an expert in his care...this empowers me to make informed choices.

As he stabalized and became stronger with the care we chose for him things changed dramatically for us. Each child is different, what I do for mine may not be the best choice for everyone. However, IMO, it has been worth the research into natural things which support proper gut and lung health, other healing modalities which may compliment traditional care, and proper mommy care (self-care is maybe the most important thing we do for our children).

Self-care...I finally broke down last Spring with the grief and guilt I was carrying around silently. I had a job to do which was feed and care for my son. When he started getting stronger...it was my turn to care for myself. It was really hard, to feel so helpless, so angry at the world. I was literally torn open my all we had endured. Though others go through more perhaps, it matters only how it affects you and how you can come to a place of acceptance and healthy outlook. I needed help with this part of it and for the first time in my life I had to admit it. I went for counseling and they taught me a technique (Emotional Freedom Technique) which really helped me release the trauma of that year. It helped so much and in about 6 months or so, I was much more at peace with things. I still go from time to time when I feel I need it, but just every so often.

You are most definately not alone. This is hard sometimes, especially when we are made to feel so small compared to the doctors. There are some professionals who don't see it this way and it is worth it to build a support system which empowers you in her care, your own care. It is okay to be angry sometimes and to let it out. There are many ways to work with these powerful emotions, one is sharing them openly like you have here.

Warmly,

 

[Foody]

Our son Ben is 2 1/2 as well. His first year of life was the hardest time of our lives (3 hospitalizations, home care after 2 of them, doctors which needed to be trained how to treat my family ;-). Too much to bare almost. It affected us very deeply and asked more than I thought I was capable of doing. But I did do it and so are you! You love your daughter and you will always do your best for her.

We had to set our doctors straight many a time and fight for what we feel is critical to his care. They are, for the most part, understanding and flexible. If this were not true I would not be including the on MY MEDICICAL TEAM for MY CHILD. Do you see, they are my resource when I need to decide what I would like to do for my child. There are other professionals in which I look to outside the clinic as well. I also expect myself to be an expert in his care...this empowers me to make informed choices.

As he stabalized and became stronger with the care we chose for him things changed dramatically for us. Each child is different, what I do for mine may not be the best choice for everyone. However, IMO, it has been worth the research into natural things which support proper gut and lung health, other healing modalities which may compliment traditional care, and proper mommy care (self-care is maybe the most important thing we do for our children).

Self-care...I finally broke down last Spring with the grief and guilt I was carrying around silently. I had a job to do which was feed and care for my son. When he started getting stronger...it was my turn to care for myself. It was really hard, to feel so helpless, so angry at the world. I was literally torn open my all we had endured. Though others go through more perhaps, it matters only how it affects you and how you can come to a place of acceptance and healthy outlook. I needed help with this part of it and for the first time in my life I had to admit it. I went for counseling and they taught me a technique (Emotional Freedom Technique) which really helped me release the trauma of that year. It helped so much and in about 6 months or so, I was much more at peace with things. I still go from time to time when I feel I need it, but just every so often.

You are most definately not alone. This is hard sometimes, especially when we are made to feel so small compared to the doctors. There are some professionals who don't see it this way and it is worth it to build a support system which empowers you in her care, your own care. It is okay to be angry sometimes and to let it out. There are many ways to work with these powerful emotions, one is sharing them openly like you have here.

Warmly,

 

[Foody]

Our son Ben is 2 1/2 as well. His first year of life was the hardest time of our lives (3 hospitalizations, home care after 2 of them, doctors which needed to be trained how to treat my family ;-). Too much to bare almost. It affected us very deeply and asked more than I thought I was capable of doing. But I did do it and so are you! You love your daughter and you will always do your best for her.

We had to set our doctors straight many a time and fight for what we feel is critical to his care. They are, for the most part, understanding and flexible. If this were not true I would not be including the on MY MEDICICAL TEAM for MY CHILD. Do you see, they are my resource when I need to decide what I would like to do for my child. There are other professionals in which I look to outside the clinic as well. I also expect myself to be an expert in his care...this empowers me to make informed choices.

As he stabalized and became stronger with the care we chose for him things changed dramatically for us. Each child is different, what I do for mine may not be the best choice for everyone. However, IMO, it has been worth the research into natural things which support proper gut and lung health, other healing modalities which may compliment traditional care, and proper mommy care (self-care is maybe the most important thing we do for our children).

Self-care...I finally broke down last Spring with the grief and guilt I was carrying around silently. I had a job to do which was feed and care for my son. When he started getting stronger...it was my turn to care for myself. It was really hard, to feel so helpless, so angry at the world. I was literally torn open my all we had endured. Though others go through more perhaps, it matters only how it affects you and how you can come to a place of acceptance and healthy outlook. I needed help with this part of it and for the first time in my life I had to admit it. I went for counseling and they taught me a technique (Emotional Freedom Technique) which really helped me release the trauma of that year. It helped so much and in about 6 months or so, I was much more at peace with things. I still go from time to time when I feel I need it, but just every so often.

You are most definately not alone. This is hard sometimes, especially when we are made to feel so small compared to the doctors. There are some professionals who don't see it this way and it is worth it to build a support system which empowers you in her care, your own care. It is okay to be angry sometimes and to let it out. There are many ways to work with these powerful emotions, one is sharing them openly like you have here.

Warmly,

 

[Rebjane]

You've gotten some wonderful advice already. First off your daughter is just beautiful. From personal experience, nothing with CF seems to stay the same. For a control freak like me, it's hard. One doc once said to me "Knowledge is power" It's so true. Educating myself about CF has helped as well as knowing CF IS so individual that what may work for one CF'er may not necessarily work for another. My daughter who is 4 with CF had a very tough time respiratory wise at the age of 2 1/2 as well. It's hard when they can't verbalize exactly how they feel , too. As mom you know your child best. I felt at the time, when my daughter was having a tough time , that the docs maybe weren't listening or I wasn't being clear enough. We ended up getting a second opinion, with aggressive treatment, PICC line ,IV, bronch she improved, and hasn't been admitted to the hospital since. Maggie has a health care routine we've stuck to since that hospitalization. We've had some med adjustments, tried new things but our airway clearance routine and most meds are the same. We do not skip treatments and try our best to nip stuff in the bud. Coming to this site has helped as poeple understand what we feel. I've found very few people truly understand what it's like, because how could they unless they too have a child with CF?