Feeding tube awareness week catchup...

So, I missed a couple of topics for Feeding Tube awareness week,

I am gonna try and catch up...

Yesterday's Topic was: 

How has your attitude/family/friends' attitudes changed towards tube feeding? 

What has awareness of the positive benefits done to change perceptions? 

About a year before I became pregnant with Lily 

I met a woman whose son was fed through a G tube.

I remember being shocked, and

confused as to how that would work

I also remember telling her

She was amazing!

And I didn't know how she did it!

I EMPHATICALLY told her

"I could never handle something like that"

I now understand that a parent can and will do whatever is needed

And apparently I CAN handle it :)

And by the way,

the woman I met back then IS AMAZING

and I look up to her.

She is an example to me in more ways than one!

I also understand that the feeding tube is 

A blessing to the children that need it,

Even though it brings heartache and headaches too.

And that it is the difference between life and death.

I was AMAZED by how simple this life saving technology is.

And now I see it as a part of my daughter.

I love everything about her

including her tube.

because without the tube

I wouldn't have her.

That doesn't mean I am happy she needs it,

not even close.

And It took quite a while to come to peace

with the rubbery plastic thing poking out of my daughters stomach.

But I do NOT want her to hate ANYTHING about herself

and since it is a part of her,

I HAD to learn to

accept, embrace and love it.

And so that is why I proudly promote awareness, and wear buttons, and shirts.

And tell anyone who asks more than they ever wanted to know about tube feeding :)

*******************************

Today's topic is:

The need for greater awareness in the medical community -Explain a situation where a clinician didn't understand tube feeding and what was the impact.

(The goal here is to point out that awareness is needed among all audiences. Certainly there are clinicians who are well versed and expert in this area, however, there is a need for basic knowledge among a wider range of medical professionals)

Ha ha ha...

This topic makes me laugh.

I have so many many stories about naive doctors making careless comments

Its hard to choose.

I will tell about our lovely doctor from our hospital stay last week

This doctor (lets call him Dr. Silly)

came in to check on Lily last week

we had, had Dr. Silly once before and I wasn't pleased with him then either.

 Basically Dr. Silly walked into the room without even looking at her chart

He asked me why we were there and I told him.

He then began the routine check over all doctors do.

When he walked in she was just finishing 

3 oz out of a bottle.

As he lifted her shirt,

he furrowed his brow and pointed at her g tube then at the empty bottle

and said "well why does she even have that?"

I started to explain her long list of diagnosis'

(which are on the FIRST PAGE OF HER CHART! I know cause I peeked...)

 He cut me off.

He didn't understand that just because she has the ability to drink from a bottle,

that she lack the ability to get ENOUGH to survive from a bottle

and on some days she is completely UNABLE to drink at all.

He then told me he didn't understand why we were here cause she didn't 

"look sick"

(She sure looked sick to me)

So I told him about her white count, and her other diagnosis'.

Any ways the story goes on and on

but I don't want this to turn into a HUGE rant about him,

So lets just say We won't be seeing Dr. Silly again while we are there.

I also want to point out besides bringing me ( a stressed and scared parent) to tears,

the impact from him not understanding tube feeding was quite small.

We had a different Dr. the next day

And she was phenomenal.

But in another situation the impact was HUGE.

It started with the lack of understanding from Lily's first Primary care doctor.

Her doctor SHOULD HAVE sent us to a GI immediately.

Lily couldn't suck or swallow.

She vomited and screamed for hours a day.

Lily was not gaining weight and fell far off the growth charts.

I kept calling her doctor and telling her something was wrong.

I think she just didn't understand what to look for and

when a GI referral was important,

or when a patient was beyond her expertise.

I finally had to tell her to send us to one.

When her first GI took a look at her she was 

EXTREMELY CONCERNED.

She was talking about how serious it was.

I knew something was wrong but had 

NO CLUE she would need a feeding tube,

or that she could have brain damage from being so malnourished.

I SHOULD have pushed harder for her doctor to do something,

I should have switched Dr's, 

I should have realized she was sicker than I thought...

but in my defence I was a first time mom,

I was new to the whole "being an advocate for your child thing", and 

I was not the one with a PHD...

I just think that if that doctor had been more aware about

feeding  tubes and when a child needs to see a GI,

Lily wouldn't have suffered quite as much in the beginning.

And maybe she wouldn't have sandifer syndrome...

Hopefully, the Dr. learned a bit from Lily and wont let another child go as long

without a referral.

I also missed Tuesdays topic and will try to catch up tomorrow...