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.