Jump to content
RemedySpot.com

more school issues

Rate this topic


Guest guest

Recommended Posts

Guest guest

Can i vent for a minute???????

OK, 's trach came out 4 years ago, she hasnt been suctioned in over 5

years. The ENT encouraged us to teach her to cough and clear her own airway,

she can cough so strong she used to send projectiles across the room out of

her trach! I owe a lot of credit to her being decannulated b/c of this. She

has always hated being suctioned.

After the trach came out we carried the suction machine with us for another

year, for emergency purposes. Still never used it.

still attends school with her own nurse, b/c of secretions, feeding

tube and her heart. Her school nurse gets approached yesterday by the Speech

Therapist who says, " why arent you carrying a suction machine? " . We havent in

over 2 years. I even packed it away at home. is having a bad allergy

season, she is coughing, but coughing is good, she is clearing her own

airway. It is not in her lungs.

Then today, the school nurse approaches one to one nurse and says it has

been brought to her attention that may need a suction machine. " If mom

does not have or want one, the school could buy one. " . I do not want

suctioned, her doctors know we dont suction. She hates it and doesn't need it.

ly i dont think the Speech Therapist is a nurse.

OK maybe I am a bit sensitive, but I have really had a bad year. It is the

same Speech therapist that is worried that has lost weight. Yes she

has lost weight, BUT, i talk to the GI doctor regularly, the pediatrican is not

worried. we saw an endocronolgist last week, talked about CHARGE, growth

issues etc. We are having some more blood work done next week. SO we are on

top of it. The Speech therapists says " mom doesn't seem to be worried " ! I am

on top of my daughter more than anybody I know. (i dont know all of you!!!)

OK, I am done venting for now. thanks for listening.

Cathie, 's mom 11yr CHARGEr

************************************** See what's free at http://www.aol.com.

Link to comment
Share on other sites

Guest guest

Cathie-

I hear your frustration. You know, we get so used to all this stuff that we

can care in a really big way without appearing to be worried. You know,

another person who's typical child suddenly had some weight loss might be

" acting " worried. But we take it all in stride - which can make us appear

to be indifferent. Do you think that might be the case with the SLP? Maybe

she just doesn't understand that crisis looks different when it becomes our

norm.

I think you are absolutely right to demand no suction at school. Isn't that

something to be ordered by a dr?? Not the school nurse and not the SLP.

They are way out of bounds, I think. Now, this is out of my realm of

experience so I could be wrong. But my gut is with you.

Michele W

Aubrie's mom

Link to comment
Share on other sites

Guest guest

Sounds like someone is seriously overstepping their bounds...I would set her

straight quickly...

>

> Can i vent for a minute???????

> OK, 's trach came out 4 years ago, she hasnt been suctioned in over 5

>

> years. The ENT encouraged us to teach her to cough and clear her own

> airway,

> she can cough so strong she used to send projectiles across the room out

> of

> her trach! I owe a lot of credit to her being decannulated b/c of this.

> She

> has always hated being suctioned.

> After the trach came out we carried the suction machine with us for

> another

> year, for emergency purposes. Still never used it.

> still attends school with her own nurse, b/c of secretions, feeding

> tube and her heart. Her school nurse gets approached yesterday by the

> Speech

> Therapist who says, " why arent you carrying a suction machine? " . We havent

> in

> over 2 years. I even packed it away at home. is having a bad allergy

>

> season, she is coughing, but coughing is good, she is clearing her own

> airway. It is not in her lungs.

> Then today, the school nurse approaches one to one nurse and says it has

> been brought to her attention that may need a suction machine. " If

> mom

> does not have or want one, the school could buy one. " . I do not want

>

> suctioned, her doctors know we dont suction. She hates it and doesn't need

> it.

> ly i dont think the Speech Therapist is a nurse.

> OK maybe I am a bit sensitive, but I have really had a bad year. It is the

>

> same Speech therapist that is worried that has lost weight. Yes she

> has lost weight, BUT, i talk to the GI doctor regularly, the pediatrican

> is not

> worried. we saw an endocronolgist last week, talked about CHARGE, growth

> issues etc. We are having some more blood work done next week. SO we are

> on

> top of it. The Speech therapists says " mom doesn't seem to be worried " ! I

> am

> on top of my daughter more than anybody I know. (i dont know all of

> you!!!)

>

> OK, I am done venting for now. thanks for listening.

>

> Cathie, 's mom 11yr CHARGEr

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

Link to comment
Share on other sites

Guest guest

MIchele,

what a great phrase: " ...doesn't understand that crisis looks different when it

becomes our

norm. "

And CAthy, I am with Michele, stick to your guns. You know where you have come

from; how strong is; and the basic: YOU KNOW HER BEST AND WHAT SHE NEEDS.

xo

pam

RE: more school issues

Cathie-

I hear your frustration. You know, we get so used to all this stuff that we

can care in a really big way without appearing to be worried. You know,

another person who's typical child suddenly had some weight loss might be

" acting " worried. But we take it all in stride - which can make us appear

to be indifferent. Do you think that might be the case with the SLP? Maybe

she just doesn't understand that crisis looks different when it becomes our

norm.

I think you are absolutely right to demand no suction at school. Isn't that

something to be ordered by a dr?? Not the school nurse and not the SLP.

They are way out of bounds, I think. Now, this is out of my realm of

experience so I could be wrong. But my gut is with you.

Michele W

Aubrie's mom

Link to comment
Share on other sites

Guest guest

that person sounds like she needs to have something up her bum of course a

charger is gonna cough more in spring with alergies has she not heard bout

stuff like hayfeaver mum has that she doesnt need to suction for that lol

hugs ellen in aus who just used the charge as a way to tell a sales caller

off

>

> MIchele,

> what a great phrase: " ...doesn't understand that crisis looks different

> when it becomes our

> norm. "

>

> And CAthy, I am with Michele, stick to your guns. You know where you have

> come from; how strong is; and the basic: YOU KNOW HER BEST AND WHAT

> SHE NEEDS.

> xo

> pam

>

> RE: more school issues

>

> Cathie-

>

> I hear your frustration. You know, we get so used to all this stuff that

> we

> can care in a really big way without appearing to be worried. You know,

> another person who's typical child suddenly had some weight loss might be

> " acting " worried. But we take it all in stride - which can make us appear

> to be indifferent. Do you think that might be the case with the SLP? Maybe

> she just doesn't understand that crisis looks different when it becomes

> our

> norm.

>

> I think you are absolutely right to demand no suction at school. Isn't

> that

> something to be ordered by a dr?? Not the school nurse and not the SLP.

> They are way out of bounds, I think. Now, this is out of my realm of

> experience so I could be wrong. But my gut is with you.

>

> Michele W

> Aubrie's mom

>

>

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...