11 October 2008

Everything Old Is New Again

I haven't updated the last few days because, quite frankly, things were changing on an hourly basis.

KJ has been to ER twice this week at two different hospitals for the 103 temp that will not end and now she has begun having THE HEADACHE again with peripheral vision loss on one side. Her GP told her yesterday that her optic nerve is swollen and there is a problem with her shunt and she sent her to the local hospital to be admitted.

KJ now has reached a new status with having the shunt...she can't have a lumbar puncture done unless it is done by a neurosurgeon because an untrained person could accidently puncture the shunt and that just opens up a whole plethera of other problems.

They do not have a neurosurgeon in Southern Illinois so they wanted to transfer her via ambulance back up to St. Elizabeth's where we live where her surgery was done, etc.

That was the plan.

They finally got ahold of the neurosurgeon up here who did the surgery who said he didn't come into the hospital on weekends and she could call him on Monday.

So she was discharged from the ER in massive pain and noone did anything. In recap, Friday evening was spent telling her by the ER staff that she needed to be shipped out to another hospital and brought out all the scary words that make you shake to the core of your being. She got herself psyched for all of this that has hit her in the face in a matter of hours only to have them say, "Whoops....change in programming. The situation you have been told that is going to happen has been jerked from the channel. Good bye, good luck and God bless." Talk about being kicked to the curb. All I could do was try and comfort her over the phone while her world was once again falling apart.

I had her dad pick her up and take her to his house. She's going to call me when she wakes up and we're going to come up with a plan. I will either go and get her today or Sunday, bring her up here and start the St. Elizabeth Dance all over again.

She is really getting tired of all of this. She thought she was on her way back to a life. I'm hoping even though they said the shunt has moved 1 cm(and gotta tell you, I'm not trusting the accuracy of that report from Southern Illinois, because, golly gee, they've probably never seen a spinal shunt before and without the original films they don't know if it has moved or not) there will be something that can be done besides going back to surgery and redoing it all.

In Monday morning quarterback style, my biggest mistake was not going to get her Monday when she got sick and get her back up here to one of her docs. But it was *just* a fever. She had no headache. She had a cough. I was going with virus or bad cold. I somehow in my infinite wisdom did not associate that with shunt problem. So I'm kicking my butt up and down the steps today.

So there you have it. The saga rolls.

Please keep KJ in your thoughts and prayers. Things have got to get better for this child.


kimmy said...

Things have GOT to turn around soon for KJ! She has already been through so much! You've been through so much too. Thinking of always :)


kim-d said...

Ness, I just don't hardly know what to say. A small miracle happened last evening and I was actually cleaning up my kitchen, which caused me to miss your call. Then I went to bed very early, but Hallie clued me in this morning.

I'm so sorry I missed your call; I'm so sorry for KJ; I'm so sorry for you and Roger. I even feel a little bit sorry for that doctor that DOESN'T GO INTO THE HOSPITAL ON WEEKENDS--ummm...huh?--because what goes around comes around, and his day will be coming. Soon, hopefully.

Big hug, Ness...

Laura ~Peach~ said...

my dear ness you have no reason to kick yourself there is no way of knowing IF the shunt is the problem until she is seen at St Elizabeths the folks in SI are probably drawing straws trying to pawn her off ... as for a dr who does not go in on the weekends... PFFT he needs to be removed from the hospital ... only dr's who do offices exclusevly dont go in on the weekend and they still go to hospitals once in a while!
Hugs and prayers
Love you guys!

jojo said...

Ness you are an incredible mother...don't kick yourself for this. You are doing all you can with what you've got right now. How I wish I could help somehow. Please know I'm praying for KJ and all of your family.

And poohey on that doctor ;)

Debra W said...

Oh Nessie,

I am so, so sorry to hear that KJ is experiencing even more problems. I was so hoping... I cannot believe that the staff at the hospital allowed her to go back home with a fever after what she went through. WHAT WERE THEY THINKING?????? It makes me sick to think how absolutely helpless she must have been feeling. We feel vulnerable enough when we are sick, but then to have the ER staff send her back home is unacceptable. That poor, poor thing.

Ness, as always, I am going to tell you that this was not your fault in any way, shape or form! You used your best judgement at the time, with the info that you had. She had no headache and she had a cough. Sounds like a possible cold, flu, etc. Not a shunt issue. You had no way of knowing what was brewing. Honestly, I don't think things would have gone any differently if you had considered a shunt problem since she had already been to the ER. So please, no "mommy guilt". It won't do you any good and it clogs your brain!

KJ is in my thoughts and prayers. She WILL get better. It's just going to be a lot more complicated than it should be. You and I both understand how that goes, dear friend. Keep your hopes up. You will get her through all of this because that is what a mom is good at doing. Especially one who loves her baby girl as much as you do...

I will check back again tomorrow in hopes of some better news.

Love you,

Steph said...


I just got home from my trip to Tampa and had to come and check on you all first thing. I'm sorry to hear that KJ isn't doing any better. I'm keeping the prayers going. Please call if there is anything at all I can do.


Alice said...

I know mama's blame themselves - but Ness, you have done everything in your power to help your daughter and get her well. Don't blame yourself for inept people in the ER. You just focus on taking care of yourself and KJ. Know we are here. We are praying. And it is going to work out just fine.