13 October 2008

We Took A Hit

Or had the rug jerked out from under us.

The shunt, what was billed as the end-all-be-all-happily-ever-after, is not doing the job.

After head CT, several abdominal x-rays and 8 hours they ruled out infection and misalignment of the shunt. There does seem to be a 90 degree bend in it in the abdominal area but it was of no concern to them.

Neither was the fact that she has lost peripheral vision on the left side once again.

We also found out that, contrary to belief, they did not put a pressure valve in the shunt that could be adjusted. In fact, no pressure valve at all. Just your every day garden variety glorified piece of tubing. We have the same thing on our fish tank.

And speaking of pressure, they didn't feel the need to do a lumbar puncture to get her pressure reading.

And for whatever reason, the shunt is not draining the spinal fluid adequately to keep the 10 out of 10 headaches at bay.

And...oops, we forgot to check the swollen left optic nerve. And when it was brought to their attention, oops, the nurse wouldn't call the doctor back in to check it. Said if there was any problem with the OPTIC NERVE THAT IT WOULD HAVE SHOWN UP ON THE HEAD CT.

You'll pardon me if I disagree.

The fix? Well, let's put her back on the know, the $400 prescription drug. It only worked for 2 days last time.

Tonjia is absolutely right...we need a second opinion. Like from one of the St. Louis neurosurgeons/neurologists/hospitals across the river. But then there's that thing about having no insurance. Usually the bigger hospitals frown heavily upon that.

You know that SPLAT when the bug hits your windshield?

When KJ and Roger walked in the door tonight KJ was the bug. Totally shocked. The first words out of her mouth were, "Mommy, I thought this was over. I was ready to get on with my life. I even checked out au pair jobs in Ireland. What if the Diamox doesn't work? What then? Am I ever going to have a life? What if I go blind?"

Yeah, field those questions, Mom.

Somehow my "look at the cup as being half full instead of half empty", "you only have the moment-enjoy now...there are no assurances for tomorrow for any of us", or "You're putting the cart before the horse" somehow wasn't cutting it for her.

And who can blame her?

Her neurosurgeon couldn't be bothered in coming to see her(his office is attached to the hospital).

If I wasn't the Mom, I would help her burn her birth certificate and skip off with her to Somewhere Other Than Now. She's had her share of crap the last six months and at 21 her life is ahead of her.

But, I don't roll like that.

Moms aren't allowed to.

I will find the way to get help for her.

I will help her live for the daily victories and appreciate the now while helping her get to the future and have a life.

She's always had more determination and get-up-and-go than anyone I've ever seen. She stared down ADHD, got it together to drive a car and outacted and outsang anyone in her high school musicals and show choir competitions. She was a phenomenal waitress at a Greek restaurant in Richmond and the place lost customers and money when she moved back to Illinois last year.

She's a beautiful soul...too much so to let this pseudotumor cerebri get her down and steal her life.

She has known how to make lemonade AND lemon bars out of the lemons Life handed her as an unwanted and unloved granddaughter of my father's and she's my unsinkable Molly Brown.

I just have to get that message to her.

And this is where all my blog readers come in.

Along with your prayers and good thoughts, please drop an email of encouragement to KJ at if you feel led.

Kiereney Jo reads my blog and asked me to thank you all for the support, love and prayers you have already blessed her and our family with during the last six months. You've been better to us than people we've known all of our lives.

She's asleep in my recliner and I hope that recliner lovingly wraps its arms around her with the renewed strength, determination and health it has blessed me with.


Wonderful World of Weiners said...

Just emailed her. And am now sending the warmest thoughts and wishes I can muster your way.

Stay strong momma.


jojo said...

Oh Ness...i'm speechless. I am so angry right now that I am going to have to take a deeeeeeep breath and come back later. I will be sending all my good thoughts to KJ and love and strength to you...

dlyn said...

I am so sorry that you guys are still going through all of this - my prayers continue and I am emailing KJ right now.

Alice said...

Ness, sending you lots of love and prayers -and a note to KJ, too. WE love you all and will continue to pray, pray, pray. There is an end in sight. Don't lose hope. Don't forget that you have a Heavenly Father who knows your every concern before you voice them and holds them in the palm of His hand.

Debbie said...

Oh Ness, I am so sorry, Things have got to get better for you and Kiereney and the entire family!! You are in my continued thoughts and prayers.

God Bless~

kimmy said...

Continued prayers Ness.


Debra W said...

Ness, you are setting a very good example for your KJ. She has watched you go through some extremely difficult times, and come out on the other side with a strong and positive outlook. She WILL get through this. YOU WILL GET THROUGH THIS.

I am sending lots of love and healing prayers your way.


Tonjia said...

I just emailed her too.

As for the 2nd opinion, I know that Johns Hopkins University Hospital in Baltimore does not require insurance for problematic cases such as KJ's. It may be a long way to travel, but check out your local University Hospital. If they are a teaching facility they will have financial counselors available for Kierney.