19 November 2008

There Is No Victory In Being Right

except *maybe* that it confirms that you are not totally crazy when your suspicions about what is wrong with your daughter are confirmed to be spot on.

Took KJ to the neuro today. Last time he saw her was September 8 when she collapsed on his floor and went to the hospital in an ambulance.

And right here, right now I want to thank Katie at Overflowing Brain(check my sidebar to go to her blog. She is one indestructible, strong woman and compared to what she has gone through, KJ's health issues are minor. Katie has kept it real, shared her medical journey including the bad Dr. experiences and it was from reading her blog that I regrouped and purposed that today's visit was going to result in answers or else.

I had my game plan on...dates and tests and results memorized(KJ wouldn't let me bring my wall calendar where I have everything written down...she is a 21 y/o and has her rep to protect-lol) and when the Dr. came into the exam room and asked how things were going, we told him. I quoted what he had told me when he diagnosed KJ with pseudo tumor cerebri, about the PROGRAMMABLE shunt she was SUPPOSED to get and about the 2 brief weeks of pain free/full vision and then the world fell apart again. How 2 weeks ago KJ went through 4 taps with the first 3 being dry taps, etc. and then asked the 64,000 dollar question...if she had a catheter in her spinal canal instead of a programmable shunt (that would only activate to drain spinal fluid if her pressure rose) and the catheter was draining her spinal fluid 24/7 regardless of pressure measurements , would that cause the same symptoms as too high pressure?

His answer?


And then he tried to tell me that her catheter had a pressure valve in it...

Wrong. I have the op report to prove it.

Then I asked what would happen to the brain if her spinal pressure/fluid amount remained low due to the 24/7 draining of the catheter?

He said, "Nothing." (I will be researching that answer.)

I asked what was the next step.

He said, "Well you could overhydrate her and give her caffeine and that might help raise the pressure."

KJ and I chimed, "Did that---did not help."

He asked why the neurosurgeon didn't put in the programmable shunt and we told him that he said her ventricles in the brain were too small and he had to put in the lumbar shunt/catheter.

I asked for referrals to neurosurgeons in St. Louis 16 miles away and he gave me two names.

I called one of them(couldn't pronounce the other one's name) and their policy is that they don't accept private pay(no insurance) patients. The appointment scheduler asked what was going on and after I told her, she asked if she could put me on hold and when she came back, she said she had talked to the Dr.'s office manager and she said to have faxed all of KJ's medical records pertaining to the surgery, doctor visits, etc. and Dr. Rich will review them and call me to let me know if he can/can't accept her as a patient.

The plan now is that KJ sees the original neurosurgeon who put in the low back(lumbar) shunt on December 9 and I tell him what the neuro said about her pressure being too low with the continuous draining of the shunt and see if he will put in either a VP shunt(in the head) or a new type called a cisterna-atrial shunt that goes from the site where the spinal fluid is manufactured in her brain down to her heart to drain. It has shown results of less chance of blocking up and having to be replaced. It seems like the other two programmable shunts(low back and head) have to be replaced often. If he says he can't, then I'm faxing all her medical records to Dr. Rich and see if he will take her as a patient.

I had mixed emotions when we left the neuro today. Glad that we had answers to the questions and that my hunch about what was causing the problem panned out but realizing that we are back at one in our quest to get KJ fixed.

Thank you for all of your good thoughts and prayers for KJ.

We will get up and carry on again tomorrow.


Laura ~Peach~ said...

well Ness it looks to me like you did it ! :) you were able to type it out and it makes sense just as it did when you were explaining it on the phone :) It was wonderful to hear your voice tonight and timing was perfect as the phone died as I walked back into the house and no less than 5 minutes after I plugged it up Cory called... said the volvo was leaking and he was attempting to get from Augusta to home (here) without blowing up the motor ... told him drive safe and call if he needed to... about 10 minutes later they were here so we now have BOTH of his broken vehicles in our drive... I took them back to the apt later on and all seems to be ok... he was not losing it not fussing just calm and accepting and realising that nothing could be done tonight to fix it... which believe me is a HUGE bit of progress on his and his fathers part...
continue to be KJ's best advocate I do believe that the right Dr is coming and the right answer for her health is there too. Hugs and prayers
Love you.

Tracy said...

You are doing your job as KJ's mom and her advocate-sucks that we have to fight so hard when they are the ones making the big bucks!
Glad you were able to get some of the answers.
Stay in the fight-you are strong as is your beautiful daughter!

Alice said...

Ness, I definitely want you on my side for any health issues! I so sorry you've had such issues, but I am so glad that you finally know and now you can do something about it. Don't give up mama bear, if there is anyone who can make this right it is you. Know we are all praying for you and KJ as you go through this.

Wonderful World of Weiners said...

I know I'm supposed to be elated that you got answers but I'm just sad. Sad that KJ and you all have to keep fighting this fight. And sad that it's taking so long to bring a young adult relief from a pain I can only imagine.

Btw, I had no idea that was a HOLY BUSH. I might not have yelled at it so intensely had I known!

kimmy said...

Ness you are such a good Mom. KJ is lucky to have you and your voice. Keep your chin up!


Debbie said...

What a good Mommy you are, and I know Kiereney is glad to have you. I hope with your voice, that she will soon be good as new. If only you could be my mommy!! LOL. Keeping ya'll in my prayers, and that better days are ahead!!!

God Bless~

Mary Ellen said...

Maybe YOU could be my mom??? I mean, you're not old enough, but still....

You're doing an amazing job. I've added KJ and YOU to our prayer tree at church. Keep fighting the good fight, and I know you'll win.

Tonjia said...

Ness, by the time you are done and KJ is better you will be smarter than these neurologists!

good job on doing some reading and asking these questions.

Did he know he was dealing with a nurse? LOLO you go girl!

Debra W said...


I have absolutely no doubt that YOU will be the one who figures out exactly what is going on with KJ, not the doctors! Keep fighting the good fight, sweet friend. You will get this resolved and KJ will be able to go back to her life as it should be,

Love you,

AirmanMom said...

ness...prayers to you and your family for strength and healing!

~AirmanMom returning to her blog...

dlyn said...

She is very fortunate to have you in there pulling for her Ness - prayers still going up that they can find some better solutions for her.