Hotel P.C.H.

So last Friday Lily was admitted to the hospital again.

This is stay #17

We spend so much time here it feels

"normal" to be in the hospital.

 

Lily has a reputation as the "adorable sassy one",

And usually the first thing a new doctor says is

"OH, I have heard ALL about you Lily!"

And they proceed to tell  us about some cute story someone told them about

from one of our past visits.

 

I remember the first time we were transferred to PCH.

This place felt SOOOO BIG!

I remember thinking 

"how can there be this many sick kids in one city at one time???"

 

PCH doesn't seem so big now. 

 

Its funny how something so large and overwhelming

can become so regular and unimpressive.

Not that I am not SOOOO grateful it exists

and that we have access to it.

PCH is a HUGE blessing in our lives!

So, the reason we are back here again is:

Her diarrhea actually got even worse.

And she stopped tolerating ANYTHING in her stomach at all.

 She was in such pain that she just screamed and screamed.

When she would actually fall asleep she was breathing fast and 

whimpering the whole time.

AND  her stomach stopped digesting and emptying properly.

So, back to the hospital and back on TPN.

We started TPN on Saturday and they did more stool studies.

Of course the studies came back positive for C. Diff

But I informed the nurse it was my belief (and the Infectious disease Dr's belief) that

it was a false positive.

The Dr didn't agree and came to "convince" me that Lily needed

yet another round of Vancomyacin.

I told him it could wait until the scope (the next morning) because I did not think she had C. Diff.

And giving antibiotics unnecessarily is a bad idea and often does more harm than good.

He didn't like that, but he had no choice because I am the Mom and

I can refuse treatment.

 

They did the scope and took some stool from

inside the colon and took a bunch of tissue biopsies.

Everything came back normal!!!

which meant no C. Diff!!!!

I was so happy for about 15 minutes that

I had made the right choice in refusing the Vanco again.

I was proud of myself for saying "NO" right to a Dr's face.

 

But as the pride faded I realized...

 

this meant we had NO IDEA why she was having this diarrhea

and why she wasn't tolerating feeds.

 

She did have a UTI however, 

but that was secondary to everything else and a few rounds of 

yet another antibiotic cleared that right up.

 

So we added two new medications to try to see if that helps the diarrhea.

We are also slowly weaning off TPN as we are verrrrrry slowly putting her back on formula.

She isn't tolerating it very well though and every time they raise the rate on her feeding pump,

She becomes more agitated and fussy

And her tummy gets slightly more tender and more extended,

And the diarrhea worsens.

She had an ultrasound of her kidneys today just to make sure

that the UTI hadn't reached them and it was normal 

so that's good.

At this point its feeling like a guessing game.

One Dr said she may just have to "live with the diarrhea, and rashes."

Yeah... I am not ready to accept that.

This isn't your average lose diaper and rash.

This is watery, putrid stuff

that comes so violently and in such huge amounts that it fills the diaper and 

then shoots up her back sometimes reaching her hair...

If I hadn't seen it happen I wouldn't believe it.

And Its not just once or twice a day(unless shes on TPN of course)

If she is on her formula it is 10-12 times a day.

No, I do not believe I can just accept that there is nothing to be done...

 I know of a few things we haven't tried yet

and I'm not even a Dr...

But, I will not quit until we have exhausted every possibility.

 

That's part of the problem with the health care system.

The Doctors only hear reports or see test results.

They cant be there to witness everything like the nurses can.

So when the Dr hears about

"severe diarrhea, and a child in pain"

they don't get a clear picture of how it actually is.

And I feel like they are inclined to believe the parent is exaggerating.

Hearing is very different from seeing.

 

Any of the nurses that have seen the diapers,

 helped clean up the blow outs,

changed her sheets multiple times a day,

seen her screaming, 

watched her skin get worse and worse as the diarrhea returns as she is weaned off TPN...

Any of the nurses that have been there to actually witness it agree

 that it is severe and we CANNOT just give up.

But nurses only have so much sway with Dr's.

Luckily, I learned early in Lily's life

how to be an advocate for her 

and I surely wont stop now.