(Written on May 18th, posted May 19th)
The alarm sounded at 5:55 am this morning. As I sat up begin my morning routine in the “Little” house, Tay quickly sounded off what seems as a routine to screaming “my head hurts!” Ugh, that was the three words I have been dreading to hear. Even though I hoped and prayed that we had found the answer for what was causing the headache, I guess deep down I knew something was not right. I have to admit I worked really hard at trying to convince myself otherwise…but knew in my heart that the surgery I have dreaded for so long was right around the corner. Taylor will be having surgery tomorrow night to revise/replace (not sure which yet) her VP shunt that she has had for more than 16 years. This may not be a huge deal to some…but for me it has been one that I have hoped would never come. I find it extremely scary, especially since it is considered “brain surgery”.
Even though I knew what was to come when I took Tay to the E.R this morning, I didn’t realize the frustration and fight that would come with it. As I carried her into the E.R, I was greeted by an E.R doctor that was a little too calm for me. She wanted to do the “usual tests”, which they had done and done AND done and seemed to ignore me when I explained that there is already a plan in place for Taylor to be immediately admitted. After she asked me Taylor’s medical history for the 5th time while she held a clip board with it written on it, I suddenly turned into the new character that should have her own comic book who I call “Psycho Mom!” I had to remind myself that I was a Christian woman many times as I nicely told the Doctor that I refused to give her anymore information until the original plan was followed. Funny how that worked, we were in a room within the hour. As I celebrated that victory, I realized quickly that another challenge was on the horizon. You see, Taylor’s neurosurgeon that we haven’t needed in 16 years has decided to go out of the country for 5 weeks. Figures, doesn’t it? Therefore, we have had to see his associate who we don’t really know, haven’t heard good/bad things about her, AND are not 100% sold on that she knows EXACTLY what is best, and l can’t forget the poor beside manner. I am not saying she is not a good surgeon or isn’t competent, I am just not completely confident at this moment. If you know anything about Nevada, our health care system is not anything to write home about (at least writing good things!!). So, during my Psycho Mom moment I began calling various Doctors in California that I had googled. I found an awesome one that would take Taylor on the spot, however the hospital there would not accept our insurance, and the Doctor and I were unable to find anyway around it. So, I began another mission…a 2nd opinion. Not allot to seek out for..you would think? Well between the hospital pediatric doctor, myself, and friends who began calling other neurosurgeons that were referred by friends or colleagues. We went through at least 6 different doctors and spoke to each one of them and none…NONE would see Taylor because they were afraid of stepping on toes! Not one!!!! Hmmm…last I checked I lived in America, where I had freedom to choose. Where is my choice for my daughter’s life? Gotta let God handle this one…gotta have faith.
I could go on and on, but I lift this one up. Meanwhile surgery is scheduled for Tuesday (tomorrow) night at 7 pm.
Till tomorrow,
Eden
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