Worried about clinic

[meteoras69]

Hello,

I just need to ask other parents: do you ever dread going to your child's clinic appointments? My 14-month-old son has been having trouble gaining weight, and his treatment team keep mentioning the g-tube. We have clinic next Wed., and I just keep thinking about it and dread going. I even feel sick at times. I keep trying to think rationally about it and tell myself, "It's all going to be ok," but then I think, "it's not ok! My child is sick!" I'm a social worker myself, but I just can't seem to talk myself out of feeling panic about this. Will it get easier?

 

[meteoras69]

Hello,

I just need to ask other parents: do you ever dread going to your child's clinic appointments? My 14-month-old son has been having trouble gaining weight, and his treatment team keep mentioning the g-tube. We have clinic next Wed., and I just keep thinking about it and dread going. I even feel sick at times. I keep trying to think rationally about it and tell myself, "It's all going to be ok," but then I think, "it's not ok! My child is sick!" I'm a social worker myself, but I just can't seem to talk myself out of feeling panic about this. Will it get easier?

 

[meteoras69]

Hello,
<br />
<br />I just need to ask other parents: do you ever dread going to your child's clinic appointments? My 14-month-old son has been having trouble gaining weight, and his treatment team keep mentioning the g-tube. We have clinic next Wed., and I just keep thinking about it and dread going. I even feel sick at times. I keep trying to think rationally about it and tell myself, "It's all going to be ok," but then I think, "it's not ok! My child is sick!" I'm a social worker myself, but I just can't seem to talk myself out of feeling panic about this. Will it get easier?

 

[Ratatosk]

I think as you become more confident as a parent of a child wcf, things get a little easier. And your son is at a difficult age in terms of feeding. I kept DS on formula until he was about 18 months and some baby food because I KNEW that he'd eat certain things.

I also sent you a p.m.

 

[Ratatosk]

I think as you become more confident as a parent of a child wcf, things get a little easier. And your son is at a difficult age in terms of feeding. I kept DS on formula until he was about 18 months and some baby food because I KNEW that he'd eat certain things.

I also sent you a p.m.

 

[Ratatosk]

I think as you become more confident as a parent of a child wcf, things get a little easier. And your son is at a difficult age in terms of feeding. I kept DS on formula until he was about 18 months and some baby food because I KNEW that he'd eat certain things.
<br />
<br />I also sent you a p.m.

 

[Mommafirst]

ABSOLUTELY, that dread is normal. Especially when there is something like the weight issue hanging over your head. The first time they brought up a feeding tube to us about my daughter I didn't ever want to go back. I cried my eyes out. It was sooooo hard. But I can tell you now that even WITH the feeding tube, it does get easier. I suppose some day it will be hard again, its not bed of roses (65 though -- lol), but you do get thicker skin ad learn to cope with the dread.

I think what really helped was time and as my daughter became her own little person, able to talk and communicate and just allowed me to see that she is who she is and she is okay. Even though she has CF, she is okay.

 

[Mommafirst]

ABSOLUTELY, that dread is normal. Especially when there is something like the weight issue hanging over your head. The first time they brought up a feeding tube to us about my daughter I didn't ever want to go back. I cried my eyes out. It was sooooo hard. But I can tell you now that even WITH the feeding tube, it does get easier. I suppose some day it will be hard again, its not bed of roses (65 though -- lol), but you do get thicker skin ad learn to cope with the dread.

I think what really helped was time and as my daughter became her own little person, able to talk and communicate and just allowed me to see that she is who she is and she is okay. Even though she has CF, she is okay.

 

[Mommafirst]

ABSOLUTELY, that dread is normal. Especially when there is something like the weight issue hanging over your head. The first time they brought up a feeding tube to us about my daughter I didn't ever want to go back. I cried my eyes out. It was sooooo hard. But I can tell you now that even WITH the feeding tube, it does get easier. I suppose some day it will be hard again, its not bed of roses (65 though -- lol), but you do get thicker skin ad learn to cope with the dread.
<br />
<br />I think what really helped was time and as my daughter became her own little person, able to talk and communicate and just allowed me to see that she is who she is and she is okay. Even though she has CF, she is okay.

 

[rubyroselee]

As a person with CF, I went through a stage when I was afraid of clinic visits. It's almost as if you know or are afraid to hear something bad about your health. So I think it's only natural to be afraid of clinic visits.

 

[rubyroselee]

As a person with CF, I went through a stage when I was afraid of clinic visits. It's almost as if you know or are afraid to hear something bad about your health. So I think it's only natural to be afraid of clinic visits.

 

[rubyroselee]

As a person with CF, I went through a stage when I was afraid of clinic visits. It's almost as if you know or are afraid to hear something bad about your health. So I think it's only natural to be afraid of clinic visits.

 

[izemmom]

Yes, it's normal!!! My daughter is 4, and I still get worked up about clinic visits. It has become easier, certainly, but there will always be "butterflies" on clinic day. It's like I'm holding my breath the entire time, waiting for bad news. And, sometimes there is bad news. We alsmost always come home from clinic with a new medicine, or a change in treatment routine, or whatever. Not that these things are "bad" but I sometimes feel overwhelmed driving back home and having to "start over."

But there's good, too Now that Emily is able to blow PFT's on her own and interact with the doctors and nurses, telling them about her eating and pooping habits and answering their questions on her own, I also drive away from every visit with an overwhelming sense of PRIDE that I never expected. She is just such a little grown up in the clinic situation. She handles her self better there than anywhere, and it brings me to tears (proud, happy ones) sometimes.

We all understand how hard it is. Keep posting and asking questions and seeking support. We're in this together.

I wanted to add, too, Emily was just a little older than your child when she got her feeding tube. I cried and cried and worried and denied the need for it for months before we broke down and scheduled the consultation. She's had it longer than she hasn't now, and it's been the BEST thing for her. When and if the time comes for you, please let us know. So many of us here have been through making that desicions. SOme of have done it and loved it, others have not had success and some didn't do it. We can all share opinions and answer questions, whatever you decide is right for your family.

Hang in there!

 

[izemmom]

Yes, it's normal!!! My daughter is 4, and I still get worked up about clinic visits. It has become easier, certainly, but there will always be "butterflies" on clinic day. It's like I'm holding my breath the entire time, waiting for bad news. And, sometimes there is bad news. We alsmost always come home from clinic with a new medicine, or a change in treatment routine, or whatever. Not that these things are "bad" but I sometimes feel overwhelmed driving back home and having to "start over."

But there's good, too Now that Emily is able to blow PFT's on her own and interact with the doctors and nurses, telling them about her eating and pooping habits and answering their questions on her own, I also drive away from every visit with an overwhelming sense of PRIDE that I never expected. She is just such a little grown up in the clinic situation. She handles her self better there than anywhere, and it brings me to tears (proud, happy ones) sometimes.

We all understand how hard it is. Keep posting and asking questions and seeking support. We're in this together.

I wanted to add, too, Emily was just a little older than your child when she got her feeding tube. I cried and cried and worried and denied the need for it for months before we broke down and scheduled the consultation. She's had it longer than she hasn't now, and it's been the BEST thing for her. When and if the time comes for you, please let us know. So many of us here have been through making that desicions. SOme of have done it and loved it, others have not had success and some didn't do it. We can all share opinions and answer questions, whatever you decide is right for your family.

Hang in there!

 

[izemmom]

Yes, it's normal!!! My daughter is 4, and I still get worked up about clinic visits. It has become easier, certainly, but there will always be "butterflies" on clinic day. It's like I'm holding my breath the entire time, waiting for bad news. And, sometimes there is bad news. We alsmost always come home from clinic with a new medicine, or a change in treatment routine, or whatever. Not that these things are "bad" but I sometimes feel overwhelmed driving back home and having to "start over."
<br />
<br />But there's good, too Now that Emily is able to blow PFT's on her own and interact with the doctors and nurses, telling them about her eating and pooping habits and answering their questions on her own, I also drive away from every visit with an overwhelming sense of PRIDE that I never expected. She is just such a little grown up in the clinic situation. She handles her self better there than anywhere, and it brings me to tears (proud, happy ones) sometimes.
<br />
<br />We all understand how hard it is. Keep posting and asking questions and seeking support. We're in this together.
<br />
<br />I wanted to add, too, Emily was just a little older than your child when she got her feeding tube. I cried and cried and worried and denied the need for it for months before we broke down and scheduled the consultation. She's had it longer than she hasn't now, and it's been the BEST thing for her. When and if the time comes for you, please let us know. So many of us here have been through making that desicions. SOme of have done it and loved it, others have not had success and some didn't do it. We can all share opinions and answer questions, whatever you decide is right for your family.
<br />
<br />Hang in there!

 

[ymikhale]

I always dread the call with culture results. My dd is doing find weightwise (thank God), but whenever I place that call for culture results and wait for them to call back, I feel just paralyzed until I find out. It always brings back the memories of when she culture PA, they took forever to call back. So every time I don't get a call back the same day I start dreading that PA is back.

Completely understand how you feel

 

[ymikhale]

I always dread the call with culture results. My dd is doing find weightwise (thank God), but whenever I place that call for culture results and wait for them to call back, I feel just paralyzed until I find out. It always brings back the memories of when she culture PA, they took forever to call back. So every time I don't get a call back the same day I start dreading that PA is back.

Completely understand how you feel

 

[ymikhale]

I always dread the call with culture results. My dd is doing find weightwise (thank God), but whenever I place that call for culture results and wait for them to call back, I feel just paralyzed until I find out. It always brings back the memories of when she culture PA, they took forever to call back. So every time I don't get a call back the same day I start dreading that PA is back.
<br />
<br />Completely understand how you feel