Thursday, May 17, 2012

Hospital stay #16 TPN

I am sad.
Very sad.
I try very hard to count our blessings and
look on the bright side,
but sometimes I just have to feel sad.
Tonight I am allowing the tears to fall.
Call it weak if you may,
But I think it is appropriate and 
actually healthy for me to feel
sorrow occasionally given the circumstances.
Yes I am fully aware that things could be 
Much much much  worse.
I tell myself that daily.
But we all have our own individual trials
And for me,tonight, this one is difficult.

That does not mean I am going to wallow for days.
Tomorrow morning I will get up, 
put on my brave face and smile until the smile becomes genuine.
But tonight I have to get all this out
or I cannot be the Mommy and wife that
My loves deserve.
And I wont be able to be strong
for the days ahead.

I am sad because
Once again Lily is going into the hospital.
This is her 
16th admittance!
Tomorrow morning they are admitting her
for at least 3 days.
They are giving her complete Gut rest,
which means no food or liquid into her stomach or bowels
AT ALL.
In order to accomplish this they will be putting her on TPN

" Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formula that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no food is given by other routes.
TPN is an artificial method of feeding, fully by-passing the GI tract. This unnatural way of feeding the body is far from perfect and comes with several significant complications"-Wikipedia

As you know from my last few posts Lily has been having severe diarrhea,
And has been acting odd.
She is increasingly fussy and clingy.
 She is having a hard time standing up straight and 
seems to have severe discomfort in her tummy especially her g tube area.
Oh, and I think she has lost weight.
She was completely into 18 mo size shorts
but they are falling off her and she is back into shorts
and pants she had previously outgrown, and her ribs are poking out again.
Now it is possible that she just grew in height therefore stretching
her out a bit,
But she doesn't seem much taller...

We have already tried partial gut rest 3 times since the Fundo.
(just pedialite for 24 hours, then half strength formula for 24 hours)  
The idea of a gut rest is to give the stomach and bowels time to 
"rest" and recharge so when food enters them again they can work properly.
Its the same idea as when a cell phone is acting weird,
 so you shut it off and turn it back on again.
Well that's the idea I guess 
But there is a problem,
It works for a few days but then it just keeps coming back.

And of course her RASH!
It is STILL THERE
and getting much worse now.
Now instead of a nice big rash she just looks raw.
This morning when I was trying to change her diaper
She was in such pain she was screaming

"Ow OW! Why Mommy Why why why why??"

I could only cry and tell her I was sorry and was trying to
figure out how to help her.

They  will also be doing lots of blood work and stool studies of  course.

 Now, I knew the moment I heard the Mito test results on the phone, those many months ago,
that our life would be FULL of hospital stays, Dr visits, therapy's,
 and one new symptom after another.
But to actually live it...
To have it actually happen and keep happening...
I don't really have words for it.

I feel like I am constantly holding my breath for the next hospital stay.
For the next "symptom"
and the knowledge that it is not going to get better anytime soon
is always staring me in the face.
 

This is Life with Lily.

However painful it is,
No matter how many tears I shed.
I am made better just by knowing her.
She is INCREDIBLE
She is like a shooting star
lighting up my whole sky.
I marvel at her strength, beauty and intelligence.
And I am so grateful and HONORED
that The Lord trusted us
to be her parents.
I am forever changed because I know her.








Friday, May 11, 2012

Adventures in diaperland and a new best friend!

Lily Update!!
**Notice: This post may contain TMI :)


She is recovering very well from surgery.
However, She has had some major bowel issues since the day after surgery.
And her rash is still there...
She is filling 10-12 diapers a day with diarrhea,
We can't even tell if she is peeing...
Most mornings she has been having blow outs

One Lovely morning I slept in to 9 am!!
I thought she was sleeping in too...
Nope,
She was happily finger-painting herself and her crib with the contents from her diaper.
I was horrified but
My little poo smeared munchkin was soo proud of herself
She was all giggles and smiles.
 Apparently, as I was scrubbing and disinfecting the stinky hand prints
off of her crib I was saying "Oh sick, sick this is so sick"
because Lily started walking in circles
exclaiming in her sweet little cherub voice
"Oh sick, sick sick!!" (giggle) "Sick, sick sick"
while she was trying to take her temperature with our forehead thermometer!
Lol guess I better watch what I say...

Well her diarrhea was not getting better 
She was already on the medicines that are supposed to help,
and they weren't helping
so
We had to put her on gut rest for the third time since the surgery.
Gut rest is when we stop all food and put her on a slow drip of pedialite for 24 hours,
followed by 1/2 strength formula for 24 hours.
(always per Dr's orders of course)

 As soon as we stop the food (every-time) her bowel issues stop,
which gives her a much needed rest 
and a chance to restore electrolytes,
But, its miserable for her and within hours she becomes weak and shaky
 and can no longer even stand. 
On those days we cuddle all day and I am VERY grateful for netflix
We watch all of Lily's favorites
Pocoyo, Wonder Pets, Eebee Baby, etc
Lily sees it as a real treat because
 watching more than 30 minutes of TV is reserved for sick days, IVIG, and hospital stays.

I tried to take her outside
and she enjoys the sunshine and change of scene,
But all she can do is sit :(
and pretty soon she wanted back inside.

Her strength returns within a day or so after getting her back to 
her normal foods.
But so does her diarrhea.
Its not as bad as it was though so maybe it wont get that bad again.

Other than that Lily is doing very well!
(couldn't help putting this pic in here, random yes, but oh so cute!)

And we have a new best friend!!!
The WEIGHTED BLANKET!!!


Thanks to my AMAZING friend Brandis
(You can read about her daughters feeding tube adventures here)
She made this blanket for her daughter Raya, 
but she didn't like it.
So they brought it for Lily to try and
IT IS MAGIC!!!!

It has saved our sanity!!!
Lily now goes to bed at 7:30 every-night and is asleep within minutes!!!
I am no longer desperately trying for Hours to put her to bed!!
I have time to clean!!!
I have time to read!!!
I have time to BLOG!!!
I have time to watch a movie that ISN'T ANIMATED!!!!!!!!! 

AND that's not all folks!!!!

SHE TAKES NAPS!!!!!!!!!
EVERYDAY!!!!!

BUT wait there's more...

We have learned that if we bring the blanket with us everywhere 
It significantly reduces/prevents
meltdowns.
So it can be seen on her lap at the grocery store
or draped over her at church,
or placed strategically over her legs at doctors appointments or therapy.
I just can not express how this has changed our lives.
I am a much happier, more rested mommy,
Lily seems much happier,
and Shaun and I actually get to have time together after she has gone to bed!
Who knew a specially made 3lb blanket could make such a HUGE difference.

Since I am talking about things that make life with a medically complex child easier...

We also got some awesome new button buddies

Button buddies wrap around the g-tube and 
significantly reduce the excess skin buildup, as well as they 
wick away moisture and help prevent infections.
Plus they make an otherwise frightening looking medical device rather cute. :)

I also like them because they are much cheaper than gauze and tape
as they are reusable.
We change them everyday and just throw them in the wash in a delicates bag.


And since this post is kind of a Hodge-podge of randomness
here is an awesome clip of Lily's speaking skills while she is sitting in a box.

video