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."-MayoClinic.com

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 :/ )

1 comment:

  1. Poor Lily. That's quite an ordeal. Glad she got the backpack pump to keep her mobile. I was wondering if that was new when I saw her at church :) (BTW my husband absolutely loved the flower headband in her hair, and he never notices hair accessories lol)