The day finally came!

McKenna had her permanent surgery last Monday.  It's so weird to think it's over seeing how it took so long to get to that point.  Waiting in pre-op was very surreal, almost like we couldn't believe we were hours away from her surgery. 

We totally knew what to expect, what the results would be and how this surgery being done will only tone down her Occipital Neuralgia pain to a livable number.  I'm getting the impression that others around us expected this to be a cure.  It's definitely nothing of the sorts, but at least this stimulator can give McKenna 5 years(hopefully) of a better quality of life than she would have had before. 

McKenna will always suffer from this Occipital Neuralgia as there is no cure (her nerves are permanently damaged), her migraine is still a 9/10, her eyes will always claim her as visually disabled.  Her hearing is the one thing that has improved ever so slightly but we'll take anything!

Knowing that this surgery decreased her horrific, unyielding, make you want to lay down and die PAIN is enough HOPE to get up the next day and go on. 

We are so thankful for every one's prayers and support through this as my own faith is being tested more than I think I can handle. 

Lisa

First Hurdle Done.......

McKenna's surgery went well today.  She's in a lot of pain right now from her incision sight as she has wires coming out of it for the simulator box.  Every time she moves or coughs it pulls on the wires which in turn is pulling on the incision itself.  They didn't make sure she as all the way under before starting to shave her head with a razor blade and she said the pain was so extreme that it took her breath away and that she was crying so hard she couldn't talk.  They started to add medicine to her IV and she finally went to sleep, hearing that gave me the feeling like I failed her. Like I had somehow NOT conveyed the sensitivity of her scalp and pain level. Trust me........that won't happen again.  

It's been a long day, we didn't even get home until 4pm. and we left at 6:30 this morning.  We have pain meds for Kenna which she is on every 4 hours throughout the night and Zofran which helps with the nausea.  As of right now she says her occipital neuralgia pain is at a 4/10 which is a big difference from her never changing 9/10 over the last 18 months.  We have high hopes this works, just because her pain level today is down doesn't necessarily mean tomorrow will be just as good.  It's literally a day by day thing at this time.

Please keep praying for strength and healing as she's definitely going to need it over the next few weeks.

It's finally here....

Well, tomorrow is McKenna's surgery day.  Surgery starts at 9:30 in the morning with arrival time of 7:30.  After seeing the surgeon Friday we learned a lot of details we didn't know previously, such as if she doesn't get at least 50% relief from tomorrows procedure they will not do the permanent one. Also, the device implanted will only work for about 5 years then her central nervous system will get used to it and her pain will come back.  With that statement made we asked the Dr what happens then and he said that hopefully there will be another stride in Occipital Neuralgia treatments made. 

Scared to death! That's all I can say about how I'm feeling for my daughter tomorrow.  I had to know some details but couldn't bare others.  They will have to shave her long hair from the crown of her head down and wake her up mid-surgery to see if they have the implant where it needs to be.  I honestly can't even think about the possibility of this NOT working to relieve her pain.  I hope that tomorrow I can report AWESOME news!!! 

My heart is overflowing!

Thank GOD!!! Today we learned that Blue Cross will cover Kenna's surgery!!!!

I can't even paint a picture with words to show what it was like at our house during that phone call bringing the good news!!!

Every single person was crying with JOY! We are still in shock, at times it still doesn't seem real.  We are looking at mid September for relief for Kenna but we'll take it!!!

I spent the day on the phone trying to orchestrate appts and find out what our portion of the surgery will be. Anything will be better than the $100,000. we were told before.

I'm going to go celebrate with my family tonight.........Thanks for every one's support!!!!

Wish I had better news.....

It's been over a month since my last blog, I guess I was holding out for some great news to report.  I don't have great news but we are still waiting for the appeal for Kenna's surgery and I guess waiting is better than the common "no" we usually hear. 

McKenna had an appt with the neuro-opthamologist last Monday.  This particular Dr is the top in our state.....we are always referred to her by everyone we see.  Not having seen her for over a year we went with guarded but excited spirits.  Last time we saw her she told us that Kenna's injury was on the severe side and it would take a year from the injury to get better. When last Feb. came and her eyes were no better we lost hope in this specialist, and maybe thought someone else would have more insight.  We've been around that block a time or two and found that no one seems to know why Kenna's eyes are so bad.

We were called into her exam room, where the four of us sat, Mark, Kenna, Dr. Ruebenfeld and myself.  She asked us what has changed since she last saw us 15 months ago......we answered "nothing".  The look of surprise on her face kind of shook me.  I thought to myself, "hasn't she had any experience in all her years of someone NOT getting better"? She listened while I gave her a run down of the last year and all the Dr's we've seen are seeing and have appt's to see.  She would speak and I'd say "been there, done that, seen him/her". She kept looking at Kenna sitting in the eye exam chair with wonderment.  When approaching her head and giving her forehead the slightest touch Kenna winced and told her how much it hurts. After attempting to touch other places on her head ever so lightly she realized that Kenna cannot stand ANY touch no matter how soft. 

She sat back down in her chair, looked at Mark and I and then looked at Kenna.  The sorrow I saw in her eyes I had NEVER seen in a Dr before.  She almost looked as if with the prompt of our sadness she could cry right along with us.  I'll never forget her next words as long as I live. She told us "Your daughter's Occipital Neuralgia is so acute that if she doesn't have the surgery her quality of life will never be any better than it is right now". QUALITY OF LIFE!!!!????? What? I didn't even know what to think except to ask her if she'd put that in writing!? She agreed, she wished us well and off we went. 

I don't know how I feel about this still.  We have discussed having Kenna learn braille but I haven't given up HOPE that this is not her life's sentence.  I'm taking a note from my incredibly strong and courageous daughter "Never Give Up"!!!

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