Thursday, June 21, 2012


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 
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 
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.
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.
Here is the beautiful view from our room 
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.

Sunday, June 17, 2012


So I realized that Shaun
is almost never mentioned on the blog.
In honor of Fathers day I would like to rectify that.
I cannot express what an AMAZING father (and husband) Shaun is,
He is the most LOVING man I have ever met.
He has a natural talent for loving others.
He is such an example of strength, forgiveness, and enduring to the end.
And he is 
I always knew he would make a great Dad,
But to actually see him in action is incredible.
He is so engaged with everything Lily does.
He adores her and she adores him!

And he is willing to do anything to make her smile, 
or ease her fears.
During one of the hospital stays She thought he was so funny!  

 He has never shied away from changing diapers or cleaning up puke.

 He is tirelessly striving to do all he can for Lily AND for me.
I am amazed by him.
I dont tell him enough how lucky I am.
And I still can't get over how incredible it is that not only
does he know how to take care of all of Lily's special needs 
just as good as I do
(which can be rare in Fathers)
But his CHOSEN line of work
is as a Caregiver for Disabled Adults.
He spends every minute of everyday
either caring for his clients, or for Lily and Me.
He is there through the good times...
During a hospital stay she loves for her Daddy to read to her
and the hard times...

Wednesday, June 13, 2012

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.

Tuesday, June 5, 2012

A 3 day stay turned into 10....

So what was supposed to be a short 3 day stay turned into 10 days.
She was admitted for TOTAL gut rest meaning they were going do TPN.
 So we got there and OF COURSE they didn't have the TPN ready yet
So we waited and got comfortable in our room for about ten hours
Until the TPN was ready.
She LOVES to play with foam tape to pass the time...

And what kid doesn't LOVE stickers?
They did a bunch of blood work and stool studies and
She tested positive for C. Diff.
"Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL), 
often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon."

The problem was she was ALREADY on the medicine
most commonly used to treat it (Flagyl) and was on her THIRD cycle of that med.
The doctors started her on Flagyl a FOURTH time.
They also sent in an Infectious Disease Dr. (ID)
After speaking with her ID, GI, and Attending
They all came to the conclusion
(after I suggested it)
That since we had already tried  Flagyl with little to no effect
they wanted to stop the Flagyl and switch to 
a much more potent antibiotic

But an odd thing happened.
As soon as she went on TPN,
Her diarrhea stopped completely.
Now, if it was C. Diff it wouldn't have just stopped like that.
The ID docs AND GI BOTH agree it was probably a false positive.
But just in case they wanted us to finish out the 10 day antibiotic.

From there it was just a LOT of waiting.

She was on COMPLETE TPN for 3 days
Then 1/2 strength formula and half TPN for 24 hours
Then 3/4 strength formula and partial TPN for almost 36 hours,
Then they boosted her up to Normal formula at the slowest rate possible and weaned her off TPN.
As soon as they started her back onto the 3/4 strength formula the diarrhea came back.
It wasn't as bad, but bad enough.
We also found out she had lost almost 2 lbs.
She had been 22lbs 14oz
and was now 21lbs .
They wouldn't let us leave until she gained weight.
Oh and somewhere during the stay she developed a G tube infection.
Which meant 3 rounds of ANOTHER antibiotic.

I took this picture so I could remember how "fun"
it was to have a VERY MOBILE toddler attached to 
so many cords.
Now when she was younger there were times when she was attached to
just as many if not more.
And it was annoying.
But she moves SOOOO MUCH now.
There are seven or eight cords/lines in this picture.
I must admit I am so so glad we only have ONE at home now ;)
Oh and they also had her attached to TWO different IV poles.
It was a HUGE ordeal just to walk across the room.
I have never been more grateful for our laptop and Netflix than I was then!

She typically sleeps like this
Usually only if she is SUPER sick does she sleep on her back.
Unfortunately when she is all scrunched up the nurses think
 they have to turn her over to give her her meds.
When they do She wakes up.
When she wakes up she takes 2-3 hours to go back to sleep. 
Then she sleeps for an hour and its time for them to give meds again...
So after 5 nights in a row of this she slept a whole night like this
Sorry Its so blurry I didn't dare take another one for fear of waking her

For the most part we just tried to keep Lily entertained.
which was a bit of a challenge because we weren't allowed to leave the room.

 We made diaper hats...

  and tutu Lions...

 We set up a fun toy area in her crib 
and set up the laptop so she could watch her shows and Mommy could
take an HGTV break ;)
Oh, and we learned to fly by watching
The land before time...

When we finally did get to go home they sent her home on a 24/7 continuous drip.
That means she is ALWAYS attached to her feeding pump.
AND it means NOTHING by mouth.
I am sad that she no longer is able to have anything by mouth.
Not even her formula...
It is so hard to have her asking for food and trying to sneak food
when we can't let her have any.
If she sees us eating she opens her mouth wide and signs "Please"
it breaks my heart.
                                                   Hopefully this will only be temporary.

But this means we got a new pump!!!
The previous pump was temperamental and heavy and bulky.
The new pump is small and works upside down or on its side
and it comes with a backpack so she is completely
independently mobile! 


Here she is dancing to Pandora's "toddler radio" wearing her new pump.
(once again sorry it is sideways my phones camera is old and doesn't let me switch it :/ )