Wednesday, September 12, 2012

Not What We Wanted To Hear

When someone is talking to you, do you ever just hear noise??
So frustrating.
Especially when it is about something important.
I'm going to have to go back over this with the doctor tomorrow, but this is what I heard amongst the crashing cymbals and static.

Chronic rejection is a state in which the bile ducts are being destroyed or are absent. 
Remember what BA is? 
Think I was able to really comprehend anything after "destruction/absence of bile ducts??".
I'm not sure what causes the "chronic" nature of it. He'll have to re-explain tomorrow. And, I'm not for certain it is "chronic".
 The plan is as follows:
5 days pulse of high dose steroids.
Re-evaluate.

If the steroids don't do the trick, then they may consider another immunosuppressant that acts on a different aspect of the immune system.
Remember T-cells, B cells, and all that jazz?
No? Me either. Guess I'm going to have to go back and review that more in depth.

The attending doctor assures me that if the time came when he was concerned that W's liver was not functioning properly or would not be able to sustain him, he would be up front and honest with me.
And, he says that it is not time to think anything like that.

Reassuring, but I can't help but obsess and fear it.

He started his first doses of steroids this afternoon. By the grace of God, his IV still works.
We are scheduled to get a PICC line tomorrow, PRAISE JESUS.
He will be on steroids every six hours around the clock for 5 days.
And will have a whole slew of labs every morning. So, this PICC is a true blessing.

Picture time:

I guess he feels like he sits too much. To eat pizza, we now stand.

Never thought I'd think that "food court" pizza was actually good. But, comparatively speaking...

This looks like a good place to sit down.
See what I mean about germs??
He threw a mega tantrum because he wanted me to unhand him so he could sit. In the middle of the lobby.
I guess I am one of "those mothers" that lets their kids touch the floors of a public place...

Eating gelato
(I told you the Women's Pavilion was super nice)

Eating gelato like a boss

We ventured to the playroom today and he stole this taco from the play kitchen set up.
Seriously would not but the taco down.
Walked the halls with the taco.
Watching a movie with the taco.
Should I be concerned or do you think he wants some Mexican food up in here?
 
He likes to pretend he's King Kong of the Medical District

Back to touching the germ ridden floor.
After sitting, he decided he wanted to experiment with yoga.
Trust me, we washed hands as soon as possible...still think he probably put something in his mouth.
o-O


I know you all are praying hard for him, and we appreciate it.
Please keep up the good work.
:-)
PS: I miss my baby girl. She sounds SO LITTLE when I talk to her on the phone. Mommy loves you so much, Emmy!!

5 comments:

Anonymous said...

GOD WILL HELP US THROUGH THIS SET BACK, I know this! Emily is praying to baby Jesus to help her little brother everyday.
Keep your chin up, he will pull through this.
Kisses and hugs for my little man.
Love Nana

Barb said...

Dear Precious Ashley,
My heart breaks for you and your family. Know that prayers are going up for Weston all the way in New Zealand! God has got you all in the palm of His hand.
Love,
Barb

The H Fam said...

Praying for him always, Ashley. Miss you all.

Denisse said...

Dear Golden family,
My heart literally breaks for you reading about more set backs or potential problems. I would totally be obsessed too if the doctor told me that. Don't beat yourself up about it bc anyone and everyone would respond the same way. I hope to hear great news in a few days. God bless Wes having to go through all these procedures, things most if our kids will never have to experience. I am always thinking of you and praying for you guys!

Anonymous said...

Get that baby a taco :)
- Tracy

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