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!!!