November 21, 2012
Last week... Whoa. It was a doozie of a whirlwind if I ever saw one. On Sunday my parents and I traveled to Boston for my appointment with Dr. Korson, the mitochondrial specialist. Getting through airport security is always quite a to-do, but traveling with medical equipment and supplies elevates this process to hoopla status. We never check luggage containing my medical stuff, because if it gets lost, I end up in the emergency room once we reach our destination. So we have to make it through security with many thousands of milliliters of fluids to carry onto the plane. And on top of that, I'm usually hooked up to an IV pump as well. But it was such a relief that the airport staff were exceedingly helpful. They plopped me in a wheelchair and escorted us through security, all the way to our gate. Hoopla (more or less) averted!
By the time we reached Boston, I crashed for the night. And the next day, of course, was the big appointment.
I will interrupt this narrative to give you some insight into my thought process. Optimism is always a rule with me... It's a significant component in how I maintain an upbeat attitude. Simply put, I just plain prefer to be happy! But in the days leading up to my consultation with Dr. Korson, I broke another rule of mine: I got my hopes up.
Now the appointment wasn't bad, but the truth is that no doctor is ever going to have all of the answers. And in hindsight, I realize that I unwittingly created nonrealistic expectations for Dr. Korson to live up to.
He easily passed the kindness test! He is very caring, and certainly thoroughly evaluated my situation with my parents and me. And he is quite knowledgable! He just wasn't able to provide the much-needed solutions to the critical problems that I have. Dr. Korson did offer suggestions, though, for further testing that may be worth pursuing, as well as for possible supplements to add to my TPN (IV nutrition) formula.
So while my appointment was fine, and Dr. Korson did his best to help, unfortunately we came away even more confused than we were before! But I feel like the confusion is driving us to search all the more tenaciously for the help that I so desperately need. There are just a myriad of things to consider. What genetic testing will supply the most relevant information? Which type of specialist should we consult next? My parents and I are naturally eager to achieve proper pain control for me. And we are acutely aware of the risks posed by my periodic paralysis... But we are not so aware of the technicalities here, and it's really a necessity, for my safety's sake, that we learn what causes these paralysis attacks, and if there is a way to prevent them. But of course God has the answers we are seeking... If it is His will, He will reveal them, all in His perfect timing. So I'll do my best to follow His lead for insight regarding these matters!
Following my appointment I hunkered down to sleep around 8:00 (7:00 central time!) so that we could make it to the airport by 5:00 the next morning. As painful as this grueling schedule was for me, it was well worth it because I was home to my sweet Alice Eloise by 9:45 am! That Doodle. She's cute. She's cuddly. I could feel that magnetism drawing me home from 1,203 miles away.
And before I could even catch my breath from our trip, it was time for my central line placement. The whole deal started out well and good. We arrived at the same-day surgery center, where I chilled out (and I mean "chilled" quite literally) on my own little stretcher in my own little room. The Child Life specialist proceeded to bring me warm blankets (the ray of sunshine in having surgery), and we compared pictures of his doggy Douglas and my baby Alice Eloise. I was pleasantly surprised in that I was allowed to request the anesthesiologist of my liking; So Dr. Moore, my buddy who did the anesthesia for my line placement last year, did this procedure as well. He is such a fun guy! Quirky in the best way. I could envision myself co-hosting a television show with him. He is extremely smart, too. He sat down with my parents and me for quite a while to talk, just brainstorming about why I have such crazy reactions following procedures.
So everything was pretty relaxed. I was reading my Glamour magazine, and just when I randomly stumbled upon a friend's name in said publication (not even kidding!) I was whirled away to the operating room. Once they start giving you the anesthesia, there is this really happy moment when you just start to feel loopy. You say "Wahoo! Wahoo! Wahoo!", hear a few snickers from the doctors, and then you're out cold.
Until you wake up, confused. I'll tell you what, ketamine hallucinations are something else! I offered my post-op nurse the requisite hooey that immediately follows anesthesia. I informed her that my mom is Audrey Hepburn, my dad is Cary Grant, and I am Grace Kelly. "Why yes, you do look like Grace Kelly!" the kind woman replied. Sheer flattery, people! Aside from my flowing blonde locks and my alabaster skin, in no way did I resemble her serene highness, the Princess of Monaco! My hospital gown was entirely devoid of a curve-hugging silhouette. I couldn't even open my eyelids to flaunt those baby blues of mine!
Oh, and in addition to not being able to move my eyelids, the rest of my body was paralyzed as well. Mercifully, though, I was able to talk. As my mom reported to all of you, this paralysis led to an overnight admission for me. This episode was quite severe. For 17 hours or so, my joints were locked straight, resulting in extreme pain. Everyone really did their best to keep me as comfortable as possible, though, for which I am very grateful. And my nurse was just as sweet as she could be, and exceptionally attentive! When she told me that she loved the movies "White Christmas" and "It's a Wonderful Life", I knew I was in good hands. Around 3:00 am, the paralysis began to subside. You can only imagine what an incredible relief it is when this happens! My longest paralysis attack, although not as severe, lasted a week, and I have no desire to break that record. Do you know how challenging it is to pee lying down? It leads me to wonder how people can wet the bed.
Now that you have heard the saga firsthand, wouldn't you agree that last week was utterly bonkers? Oh, and did I mention that I fell in love?! It's true! I'M IN LOVE, I'M IN LOVE, AND I DON'T CARE WHO KNOWS IT! Let me introduce you to my precious turtle dove.
Don't be surprised when you catch us under the mistletoe at the mall. I have always had this fantasy in which my dream prince proposes to me, sapphire engagement ring in hand, right in front of the Rockefeller Center Christmas Tree, with sparkling snow shimmering down around us. I don't know about you, but this guy has me hearing wedding bells already!**
With Thanksgiving tomorrow, it is essential that I be in prime form in preparation for the feast. As a chef, it is one of the funnest days of the year! Krista will be around for a festive breakfast tomorrow, then I have to share my sister with Tim's family for the holiday. But Mom, Dad, Alice Eloise, and Lulu will be here to celebrate with me! I foresee some major elf work in decorating my Winter Wonderland.
How wonderful it is that we have a special holiday devoted entirely to giving thanks! I truly have so very much to be thankful for. And although I don't thank you all nearly as often as I should for your love and support, please know that each of the messages that you send brings me many smiles, and your prayers are so greatly appreciated.
I hope you have a lovely Thanksgiving!
** FULL DISCLOSURE: I am not actually in love. Wholeheartedly smitten, perhaps, but what else is new? That whole Christmasy romance fairy tale? Completely fictitious. Except I really do recurrently fantasize over a Rockefeller Center Christmas Tree proposal. With a sapphire. And sparkling snow. Just a subtle hint, boys.