Tuesday, January 31, 2012

Raw Emotions...

I'm struggling.. a lot.

I feel like I'm a bundle of raw emotion. Fear, frustration, anger, impatience all swirl around inside of me each and every day.

Many of you have read on Facebook that we are at home, again.

No, Xander is not better eating wise. In fact, a reasonable argument could be made that he is actually in a worse condition than before.

We are continuing his antibiotic for the C.diff. He is still only drinking pedialyte and will only eat applesauce, rice and bananas with an occasional pretzel or saltine cracker. This is the same thing he ate for days in the hospital. And somehow this is considered a plan.

I'm not happy that we lost ALL the foods he would eat during this last hospital stay.
I'm not happy that this is considered suitable to the attending to come home eating only these things.
I'm not happy that our gastroenterology consult never took place while we were inpatient.
I'm not happy that my conversation with the nutritionist ended today with her sighing and saying "Perhaps we will have to just do a nasal gastric tube."

I want to scream loudly that I don't want another bandaid. I want my baby to be better. I want the ROOT of the issue to be found. I want him to have normalcy and be able to eat whatever his little heart desires.

And I don't have any of that.

Only one expectation that was set for our stay at DuPont was met. He was treated for C. Diff.

We never met with the complex cases team. Yesterday when we left we were told that appointment would be Monday after gastro. Today we were told it is in March.

This coming Monday, we are returning to DuPont hesitatingly to see the gastro department and then nutrition. I fasted during breakfast and lunch today, praying for God to help me. Somehow I have to muster the strength to deal with people that have left us in a worse situation than before food-wise and people that refused to see us as inpatients.

Lord, give me tact and supernatural ability to deal with this on Monday.

Please pray.



Erika said...

STEPH. This is so insane. I was praying for yall all day today and will not stop until we see breakthrough. I don't even have any 'right' words to say, other than sweet Xander has been on my heart SO MUCH these past few days...I can't imagine what it must feel like to be in your position. God knew exactly what He was doing when He put your family together-- bless you for contending for your baby.

Tracy said...

Praying, hon. No words, but prayers will always hold the real value. ((Hugs))

Anonymous said...

Hi stephanie i am sorry to hear how things went.we will be praying for your family. You wrote somthing earlier that kinda had me thinking when he threw up it was food from 11 hours earlier? Have you seen him do this before? My friend has gastroparesis and she does that and has the loose stool. She can only eat certain things but i thought i would just throw that out their so you can look it up see what you think ? I am from momys cookgirls4

Heather (iceangel) said...

Oh, Stephanie! My Mama's heart is just breaking for you. (((HUGS))) I don't have the right words either...but our Father does. Praying he touches your heart!