Followers

09 November 2008

Please Pray

The other neurosurgeon consult came in Friday morning, said that too little spinal fluid can cause the same symptoms as too much spinal fluid and took off to go and look at her scans.

Roger came and got me about 1 because rumor had it on the floor that Dr. Sprich(the neurosurgeon consult) was coming back on the floor to talk to us and Roger wanted me there. (We were told on Thursday night that Dr. Sprich did not make rounds until after his surgeries were complete every day so no one expected him to the floor before 7 p.m. on Friday). When we got back to the room, KJ was back in Nuclear Med having more scans done.

I sent Roger home about 3:30 because he had been there since 8 that morning. About 5 Dr. Schultz(the neurosurgeon who did KJ's shunt surgery) flew in and said that Dr. Sprich didn't see anything wrong with the shunt so he was discharging her to home and go and see her neurologist again and see him(Dr. Schultz) in a month. He was in the room about 12 seconds.

KJ and I looked at each other because her scans weren't supposed to be done until sometime Saturday and I went to the nurses' station to see what was what. She said, "Oh, there's no way he would have discharged her. She still has scans tomorrow," and the unit secretary said, "Here's her chart and Nuclear Med just called and said they won't be doing any more scans on her." The nurse opened the chart and saw that Dr. Schultz had discharged her. She just kept shaking her said and said, "I don't believe this...nothing has been solved."

I called Roger and he came and got us and we were home by 6.

Last night just simply was not a good night in our household. I tried to keep it together for KJ's sake and not say a whole lot but I was seething and confused and fill in the blank on any other emotions in between.

As I was relaying all of this to Michael when he called this morning, it suddenly came together.

Kiereney's shunt is on continuous drain. Just like a sump pump. She got rid of the excess spinal fluid after the surgery and had 2 weeks of no symptoms. Then the headache came back and the peripheral vision went south again. She went back to ER, they checked the position of the shunt, said it was fine, put her back on the Diamox(a diuretic that is supposed to help get rid of excess spinal fluid) and she saw the neurosurgeon 2 weeks later who came up with doing the scans in the hospital.

They were supposed to have put in a PROGRAMMABLE SHUNT in her on September 15. It had a control on it that could be set to a certain pressure and if the spinal fluid pressure went above it, the pump kicked on and the shunt drained until the pressure was normal(again programmed into the programmable shunt at the time it would have been inserted) and then the pump kicked off until her spinal fluid pressure went up again.

She has a NONPROGRAMMABLE SHUNT in her now and it runs 24/7. Since they had to tap her 4 times to find spinal fluid the other day, I think the pressure is now too low and that's why the headaches, etc. came back. When they added the Diamox to suck more fluid out of her, it just kept the headache cycle/peripheral vision loss continuing.

So this is my plan...I'm going to call her neurologist on Monday and insist on an appointment THIS WEEK. I am taking her in and telling him my theory and tell him the solution is to replace the NONPROGRAMMABLE SHUNT with a PROGRAMMABLE SHUNT.

Yes, it means another surgery, but it also means that after she recovers, this all could be behind her by January and she could be back to normal and able to go on with her life(she wants to go to nursing school so she can give back the excellent nursing care she's received the last 8 months).

So I'm asking for your prayers that we are able to get a neuro appointment for this week, the neuro will listen to what we have to say and if he feels we are right, refer her to a neurosurgeon and get the shunt replaced with a programmable one in the next week.

Her 22nd birthday is November 24. It would be the ultimate birthday present to be able to have her life back.

For the first time since September, I feel a peace that the answer is within our reach and there is real hope that this can be brought to an end.

Thank you for your continued prayers. Our God is an awesome God and giving me phenomenal friends like all of you has been one of His greatest gifts to me.

And to continue that thought, I received a card in the mail today from The Thanksgiving Turkey. God bless you.

11 comments:

Steph said...

Ness,

Praying like crazy over here that you can get KJ in to see the doctor and that he will listen and get the issue resolved.

Happy Early Birthday to KJ and praying that for her birthday she gets her health back.

Steph

dlyn said...

Praying Ness {{hugs}}

Laura ~Peach~ said...

now that makes a lot of sense NEss... I hope and pray that you are able to get into the dr's and that they do listen and pay attention because This child (young womman) deserves to have her life back.
Love you and thank you
Laura

Tracy said...

Ness-
This has gone on so long for KJ-my heart goes out to her! Your theroy
makes sense-hopefully you can convince the dr. to listen to you and then do something about it.
Praying KJ will get to have a great 24th b-day!!!!

PS Your comment/story on my blog about running out on to the field to help Roger made me laugh-one of those most embarrassing moments huh?

Praying for you and your family as always
Tracy

Debbie said...

Mother's always know best!! Proof in point!! Praying hard Ness!!

God Bless~
Debbie

Tonjia said...

OMG I would DEMAND an appointment, tomorrow and no later! This is incorrigible. And borderline malpractice.

I am praying...

jojo said...

not only are you a fantastic mom...you are freakin' Columbo too! I want you on my side when something goes wrong lady...;)
Sending LOTS of prayers...

Overflowing Brain said...

Ness-

This will sound possibly completely crazy, but have her drink a bunch of Diet Coke. Not long after my decompression surgery I had a string of headaches caused by low intracranial pressure (my body was so used to the high pressure that when everything uninflamed post surgery, my pressure was abnormally low also).

I was beside myself and my neurosurgeon suggested drinking a few (2) diet cokes a day for a few days and seeing what happened. It increases your pressure (some doctors will have patients drink them after lps also because it can help increase pressure) and the caffeine can also help with headaches. It seriously made a huge difference after maybe 36 hours.

It's worth a try, right? And YES, she definitely should've had a programmable shunt put in. I'd like to flick that neurosurgeon in the forehead. It is completely amazing to me that they wouldn't do that.

Go be persistent and if you meet resistance, if the door closes, remember that somewhere, there is an open window. You might have to climb to find it and take a flying leap out of it, but it is there.

Good luck.

Diana893 said...

Hi there - I found your blog from Katie's and just wanted to say hi, especially to your daughter. I'm 20 (almost 21) and have pseudotumor cerebri with a VP shunt as well (though mine is programmable), so I totally understand the frustration you are going through - not having answers is the absolute worst, and being discharged from the hospital with nothing accomplished is awful. I truly hope things improve this week!

Also, I'm a junior in nursing school - kind of ironic! I'd be more than happy to talk to your daughter if she's up to it - I know for me sometimes it just helps to know there's someone else out there going through similar things.

Thinking of you lots!

Diana (Diana893@gmail.com)

Debra W said...

Nessie,

Thank God KJ has a mother who loves her so deeply that she is willing to be an advocate for her as she goes through a terrible time. You are doing such a good job, Ness, and KJ will HEAL and move forward to a much better life.

I am praying that you are able to get that appointment and that the doctor takes what you have to say seriously! What you said makes so much sense! With all of the issues KJ has had to put up with, she NEEDS a programable pump!

Please tell KJ that I am praying for her and PLEASE do something for yourself, Ness. Stress is the worst thing for our illnesses and you have had to deal with way too much. Do something nourishing to your spirit.

Love you,
Debbie

GingerJar said...

I followed your blog from Wonderfulworldofwieners or perhaps reddirt woman...anyhow, I am a nurse, my hospital doesn't do neuro, but we occasionally get post-shunts. MAKE the doc listen to you. They are in such a hurry...next patient, next procedure, next hospital round...that sometimes they need to just be still and listen..

Good luck.

Ginger