Feeding Tube Part Three

By October Lily had developed complications from the NG tube.

She was gaining weight great however,

and was no longer FTT!

But She had laryngomalagia,

and the tube was making it worse

causing her to have episodes of not being able to breathe,

Her voice was non existent or hoarse all the time,

and she was getting nose bleeds.

Plus,

the emotional trauma from me holding her down

and shoving a tube in her while

she screamed and cried

was taking a serious toll on her and me

and on her trust in me.

Plus we had a meeting with her SLP(speech language pathologist)

and with her GI, and with nutrition

and her dysphagia had gotten worse.

She HAD to have a feeding tube still for medical reasons

and also because she refused/didn't have the energy to drink more than 12 oz by mouth a day.

(she needs to get 32 oz in a 24 hour period 

to sustain herself.)

We also knew she needed a med port, and a muscle biopsy

so we thought we would do all three at once and reduce

the anesthesia exposure.

So the date was set.

It doesn't matter how 

"simple or routine" the surgery is

when your baby goes under for surgery its terrifying.

We arrived at the hospital at 8 am for a 11 o clock surgery

why they make you show up hours early to just sit in the waiting room 

and get more and more nervous is beyond me!

She was in a fantastic mood that morning and it broke my heart that she was gonna be in 

so much pain later that day.

 

 

The surgery started 2 hours late

cause they had to coordinate between 3 different specialties.

A jittery male nurse came in to take her back.

He took her out of my arms.

She screamed and reached for me as he carried her down the hall.

It LITERALLY took everything in me not to tackle him to the ground

grab her from his arms and flee the country.

They were gonna cut her.

They were gonna HURT her.

They were gonna put things in her.

I didn't like it at all.

Logically I knew she would be under for the procedure

and they would give her meds for the pain.

But I still wanted to "save her"

The waiting was hard. 

After it was over they came to get me and took me back to the recovery area

as soon as they opened the doors I heard this eerie scream/moan

I thought "wow whoever that is sounds bad".

they took me too her and I realized that noise was coming from her.

She was really out of it from the anesthesia and I could tell she was hurting.

once she was stable they took us to our room.

 she was really outta it all day

she wouldn't sleep

and for the most part didn't want me to touch her

The night of the surgery she spiked a fever. 

Her stats were all over the place.

The next few days were touch and go.

She finally stabilized enough to go home 8 days later.

 It wasn't that big of an adjustment to go from an NG to a g tube.

Its really a neat lil invention.

Its just a tube with a balloon.

 

this is what the g tube looks like with the balloon deflated.

The first time I saw it I thought to myself

"That's it?"

I expected it to be a bit more complicated

This is the g tube with the balloon inflated.

That balloon is all that keeps it inside her.

There were also a few more supplies We had to have now

 

Two more kinds of syringes

 

split 2x2 gauze

And the extension set

This is what plugs into her g tube and attaches to her feed bag.

Well that pretty much sums up the feeding tube chronicles. :)