TPN vs Neocate THE BATTLE

Working Lily off of TPN 

was much slower than last time.

Her Tummy just didn't want to accept food AT ALL.

The large yellow bag is TPN the white syringe is Lipids

In order to sustain life Lily needed to get to a rate

of 45ml and hour for 24 hours a day,

7 days a week into her G-tube.

(45ml is equal to 1 1/2oz.)

When she goes on TPN,

NOTHING goes into her G-tube.

So after she has had a few days with nothing in her tummy we 

try introducing food (her specialized formula) again.

We have to take it painstakingly slow.

AFTER being on TPN ONLY for 72 hours,

she started at 5ml/hour of formula (via G-tube) for 24 hours,

then every 24 hours we would up it 5ml.

Everytime we upped her formula rate we would lower the TPN a bit.

So to go from 0 to 45,

without any complications would take 

9 days...

And this is Lily we are talking about so

OF COURSE there were some complications.

Somewhere around 35ml

she started backing up stomach contents into her g-tube,

and then when I vented her some blood came up.

Luckily the blood only came up once so it looks like it was from the scope.

Then when we got her to 45,

She stopped tolerating completely.

Her stomach stopped emptying,

and her stomach became hard and extended again.

She was grunting and moaning in pain and her pupils were HUGE from pain.

So we had to back off a bit and turn the feed down.

Then she started having lock jaw.

About three times a day her jaw just locks open.

It doesn't seem to hurt her but

she does get frustrated with it and she has to physically

push it

( with my help)

 to get it to close.

Its only stuck like that for a few seconds

but when it does close there is a LOUD "Click"

The Doctors wanted me to take a picture of it

And I was fortunate enough to actually capture TWO. :)

We will be seeing an oral surgeon soon to see what (if anything) needs to be done

There is a possibility this will get worse over time, 

but hopefully its just a weird thing that will go away on its own as she grows...

OK, so back to her feeds.

When she stopped tolerating her feeds again,

The Dr came in to talk to me about 

Sending her home 

ON TPN.

I was NOT OK with that.

That would mean her port would be accessed 24/7

MAJORLY increasing the risk for infection.

An infection in the PORT 

IS BAD NEWS.

It would mean more trauma of dressing changes and

accessing and re-accessing the site.

It would mean home nurses.

Plus, I was against prolonged TPN use because of the damage it can do to the organs.

I just felt like sending her home on TPN was a bit drastic and 

while I am glad it is there when necessary

I don't think it was completely necessary to send her HOME on it YET.

So I told the Dr all this.

He was annoyed but agreed (after much persuasion) to consult with another Dr on it and also

give Lily a bit more time to tolerate her feeds so

we could get her on her needed rate of 45ml/hr.

Well later that day, she began tolerating much better,

and she did so well that we eventually were sent home

without TPN.

YAY!!!!

Yes her diarrhea is still there though...

She has had diarrhea for 70 days now

(with the exception of 1 or 2 days last month)

 I don't know what they are gonna do about it,

but we have many appointments over the next week so

hopefully we can get some more answers there.

So this hospital stay was just a bunch of

"waiting and seeing"

And I had to get very CREATIVE to keep Lily occupied.

 My friend Brandis brought Lily an awesome bag of little toys

and glow sticks and things to keep a toddler occupied while in the hospital.

She also brought us a red and white checkered plastic table cloth from the dollar store

to place on the ground to make a "sanitary" play place for lily on the hospital room floor.

 then I had Shaun bring two bags of beans to put into a bin for Lily to play with.

SHE LOVED them!

Here is the beautiful view from our room 

Phoenix

Helicopter???

this is our lovely prison...oops I mean Hospital room

PCH 6th floor

Happy girl

We had lots of visitors and watched ALOT

of Disney movies.

Tangled, Monsters INC, Finding Nemo, and Tinkerbell are her favorite

watching Tangled

We set up a bunch of pillows and toys in a wagon. And set the laptop so she could watch Backyardigans.

We also had the Joy of having Lily's Grandma-ish and Aunt-ish visit.

(Shaun's Aunt and cousin, but we call them Grandma-ish and Aunt-ish)

They had a trip planned for months and unfortunately we were in the hospital for almost

their whole visit.

We still had fun and Lily LOVES Her Grandma-ish!!! 

Lily is home now and very weak and clingy from spending 2 weeks in the hospital

but VERY VERY happy to be home.