Granddaughter Has WG

[crackers]

that's very encouraging news cindy.that poor girl has been on my mind all day.we have a grandson about the same age so i know what we would be going through if it was him.our thoughts are with you all.
john

[andrew]

That's gerat to hear. Brings a smile to my face. I've been hanging out for news since the last post and very happy that she is responding so well and has such great people around her!

[Sangye]

THANK GOODNESS Katie's getting everything she needs. Sounds like they're right on it. The pred will work very quickly to alleviate symptoms. You won't believe how much better she'll be in a few days.

Thank you so much for keeping us posted. She's been on my mind all day.

[Grandma2Katie]

After wandering through a maze of corridors and searching for the proper elevators, I finally found Katie and her mom. Katie was sleeping when I arrived but woke fairly soon afterwards and the tears started to fall as soon as she realized she was still in the hospital. She let the whole ICU staff know in no uncertain terms that she wanted to go home NOW. She is one unhappy little girl. She thinks everyone at the hospital is mean and won't let her eat or sit up.

Her lung x-ray was not good today and her kidneys are only working 14%. I was hoping for a big improvement today but that doesn't seem to be the case. She is having a great deal of trouble breathing and hates the oxygen tube.

At least I know she is getting the medication she needs. She is also getting quite a bit of other meds but I don't know what they are. They put in the cathater for the dialysis, but that won't be done until tomorrow.

I wish I could take her place.

Cindy

[crackers]

cindy i know this must be very frightening for her but she is in the best place for her right now.hopefully once the meds kick in things will improve.
john.

[Sangye]

Hi Cindy,
Thank you so much for keeping us updated on Katie. I bet it was a mixed bag to see her today-- relief and sadness. Wegs and the response to treatment isn't linear, so it's to be expected that she's still in bad shape. Don't get disheartened. If she isn't losing ground at this point, that is progress. It's kind of like reversing a speeding train-- gotta slow it down, then stop it, and then you can put it in reverse.

Don't underestimate the power of youth. Her body is programmed to build and repair at a much greater rate than we older folks. And it sounds like she's feisty. Very good sign.

[Grandma2Katie]

Fiesty, indeed she is. She has dubbed the entire medical staff as "rockheads."

I met her rhumatologist today. I asked about how long we could expect Katie to be in ICU. Her guess was one to two weeks. Does this sound reasonably to you all?

I am one bewildered grandma.

Cindy

[Sangye]

(Well, fiesty is good, but I don't know that it'll help her to call the people keeping her alive rockheads. By fiesty I mean she's got a lot of life in her and a strong will to live.)

I think anything is reasonable, considering the shape she's in. She'll get the most attentive and skilled care in ICU, so if they'll keep her in there, I say let 'em.

We know it's confusing. That's why we're here to help fill in the gaps, so maybe you won't have to go through as much confusion as most of us did.

[coffeelover]

I am glad Katie is getting the care she needs! I have been thinking about her along with the rest of the WG gang. ICU is not fun, all that poking and prodding, but I like Katie's spunk. She needs to find a way to accept this disease, a very tough task for such a wee one.
Grandma! Keep up the good work! You are more needed than you think!
Keep us informed when you can
Lisa

[Grandma2Katie]

Thank you all for being here. I was rather depressed when I got home from the hospital. I have to trust that Katie is where she needs to be.

Katie has always been spunky! Her mother and I talked her out of giving the nurse a "knuckle sandwich." So perhaps "rockhead" isn't quite so violent. She is just so miserable. The doctors give her sedatives to calm her down when she gets so distraught. I wish they could find a way to just let her sleep through the whole ordeal but I know that isn't possible with the lungs as compromised as they are.

We are all hanging on to the kind thoughts and good wishes from all of you. They mean so much.

Cindy