Why should THIS be easy?!?!?!

We finally got the response from the insurance company pertaining to McKenna's surgery.  They have denied the dr's request.  It's taken a week of the wind being taken out of our sails to regroup.  NOTHING in this last 18 months has gone smooth and easy so we shouldn't be too surprised this didn't either.  I have promised Kenna that no matter what we will somehow, someway get her this surgery to relieve some of her excruiating pain.  Prayers are needed now more than ever.........

Soooo Much Happiness!

In my last blog I talked about McKenna's newest Dr at the pain management clinic in St Paul.  She has now gone through her sets of shots in the back of her head with little to no relief.  The Dr kept his word and referred us to a surgeon to do the peripheal nerve block stilmulator surgery.  I never thought I'd be excited about one of my children having surgery involving their brain but this comes with such enthusiasm.  Because she did get relief even though brief they believe that this implant will work great for her.  They will make an incision in the back of her hairline (she's nervous about getting her head shaved a bit) where they will then place the electrodes, not sure of how many yet, on the nerves that are crushed from her accident.  Those electrodes will then be hooked up to a pacemaker which will be implanted either in her chest wall or abdomen and trick her brain into thinking there are no pain signals. 

I received the call Friday from the surgeons office telling me they have the order written and are just waiting for prior authorization from our insurance companies.  As soon as that happens she could be in surgery within 2 weeks!!!  The thought of this working still seems too good to be true as she has lived in such severe pain in the back of her skull for 16 months.  She doesn't know what she'd do if she could sleep all the way through the night or brush her hair without crying.

I am so thankful to all of you who pray for her! I will keep you posted......

Love,Lisa

A ray of HOPE!!!

With hope in our hearts McKenna, Lindsay and I went to the pain management clinic for Kenna's first appt. last Thursday.  The most amazing Dr walked in and we knew immediately that we were in the right place.  He spent 3 hours with us that day and for the first time in 15 months we had found a medical professional that understood Kenna's pain!  She will have 3 rounds of shots to the back of her head starting tomorrow, under sedation and hopefully lastng 24 hours.  The plan is to have 3 set of these and by the 3rd round if her pain hasn't subsided he will get her into surgery without further delay.  We were afraid that she would have to wait 4 months of trial and errors before this would happen.......needless to say we are ecstatic! 

I leave for AZ to visit my mom and dad and will not get to be there for her 1st and 2nd rounds but I can't wait to here how they go!

If surgery is elected they will place a periphal nerve block stimulator into her head and electrodes will run under her neck muscles and attach to a pace-maker under her chest wall.  This device will only cure her occipital neuralgia it will not cure her severe migraines.  At least then maybe we can get her down to the Mayo clinic to a migraine specialist to work on those.

Here we go again.....

I was finally contacted today by the United Pain management center to schedule Kenna's first appt.  It may have taken them a month to get back to me but she does have an appt this Thursday at 11:15.  So......here we go again. Another new dr, another person to explain every detail of the last 15 months, hopefully this is the place that will help Kenna.  There's a part of McKenna and I both that is scared to look reality in the face.  Will it look like hope or will it look like devastation like so many times before.  Please say some prayers that this is the right place for McKenna to be to finally find some relief and that her brain surgery will either be just a quick 4 month process away or maybe just maybe sooner!

Still pluggin along....

   WOW! What a wonder the internet is.  We belong to a group on facebook for Occipital Neuralgia and through that support group we got the name of a surgeon, 1 of only 30 dr's in the country that implants a surgical stimulator to help those that suffer with Occipital Neuralgia. He happens to be in St. paul no less! We had an appt 2 weeks ago and he said Kenna is definatley a candidate for a periphearal nerve block stimulator.  He also said if we had $100,000.00 dollars he'd do it the following day....LOL!!!! Well, since that's not an option we had to be referred to the United pain management center in St. Paul for a 4 month trial before insurance will cover 90%. We are just waiting now to be contacted by the pain center to get our first appt.  One thing we did find out at this appt. is that Kenna's nerves in the back of her head are permanently damaged, that's why the pain is so severe. This surgery will not "fix" it, it will only trick her brain into thinking the pain is not as bad.  Lots of unknowns.....we don't know how much the stimulator will decrease her pain, we don't know how long it will last, we don't know if there will ever be a cure.  Just like a spinal injury once those nerves are severed or badly damaged there is no repairing them.

My daughter, McKenna sits at these appts listening quietly. Sometimes her brain injury prevents her from understanding everything and she just shuts down. Sometimes the tears roll down her cheeks as she tries to come to terms with what her life holds for her now.  I know I've said this before but her mere strength and perseverance through this amazes me! Throughout the last year we've had so many comments as to what people think she wants to hear.  "You'll still be able to be in the FBI" or "When this is over you''ll pick up where you left off" and my favorite "God has a plan".  Well,  HE may have but I don't believe my God's plan is to make His daughter suffer day after day relentlessly.  I believe He's here but I don't believe it was His plan to hurt McKenna so bad.....

As of now, Kenna has started planting seeds for her garden.  It gives her something to look forward to every day. Now that they're blooming she's even more excited.

On one last note, the OCR (office of civil rights) is now looking into the mishandeling of the circumstances surrounding Kenna's education.  We're looking forward to their findings.

"A little collision in gym class"

I have to laugh at the stupidity of people. At McKenna's appt on Wed. the nurse who was supposed to administer the nerve block shots says to us "I heard you had a little collision in gym class".  Well,  if it was a little collision I'd hate to see what a BIG collision would be like! 


We went to that appt with high hopes. Hopes that for 5 hours Kenna would be free from that pain that wears on her so badly.  Unfortunately, it turned into the appt from hell and we left with our little fighter barely able to walk from the pain and being told to "breathe" because her mind was so overwhelmed!!!  This nurse came at Kenna's head with such brutality and inconsideration that NO ONE has ever treated her in such a manner.  Before I knew to move the nurse aside the damage had been done and Kenna was beyond a world of hurt.  Of course, I scooped her up in my lap and cradled her telling her it would be ok but all the while thinking I should punch this ladies lights out!  All McKenna could do between gasps of pain is cry to go home PLEASE!!!!


As we were leaving the nurse says "sorry for the flare up"! FLARE UP?????? OMG, I was speechless!


There were also other details to this visit like, I should be giving Kenna narcotic shots into her muscles at home, and we should have her on a "cocktail" of sorts of medicine.  


It is scary how much liberty this nurse felt she had concerning my daughter's care.  We are trying to wean her off of anything that is not working NOT add.  The last thing we need is an addiction problem too.......


Monday we have a new appt with a new neurologist. One that specializes in deep brain stimulation and is 1 out of 30 drs in the country to actually to the peripheral nerve block simulator.  Please pray that we have come to a place finally that will help Mckenna!!!!

Just when you need it!

Just now our doorbell rang, standing outside was our local florist.  He handed me a wrapped bundle and said they were for a "McKenna".  McKenna as right behind me and couldn't quite comprehend what was going on. I told her they were for her and we took them into the kitchen.  As I opened the paper she stood in surprise, out of the package was a beautiful lavendar flower arrangement sent to her by her cousin "Leah".  The card stated that she was thinking of her and when Kenna was up to visitors she would like to visit.

I wish Leah could have seen Kenna's face.......she made her day!!! Kenna sits with me at home every day and feels very alone.  The gesture of this kindness was bigger than even I realized until I saw her face.

Thanks YOU Leah!!!