“Love”-ing Life

Hey you! Yeah, you! Did ya hear the absolutely sensational news? I had a new central line placed. But wait! It gets better! Sure, I was mighty pleased that the aforementioned line was placed successfully… But – here’s the best part – even though I wasn’t exactly a walking, talking machine in so many words, I was at least a wiggling, giggling machine. My point is, guys, that I, Sabrina Giselle, awoke from surgery able to MOVE! No paralysis!

So do you want to hear the whole story? On second thought, don’t answer that. Let’s just get on with it…

Although two months have since passed, the novelty of this breakthrough hasn’t lost its glimmer; I am stillsimply overjoyed that the procedure itself and the hours following were immensely better than I ever could have hoped! The deeper sedation and slow emergence were the keys to this success. Overall, I received more than ten times the amount of ketamine used in the disastrous central line placement I underwent in February, plus propofol and plenty of versed to keep me knocked out and prevent hallucinations. This is not a protocol that would typically be considered for a central line placement, but to my amazement, my doctors said that this was perfectly reasonable given that it was the only prospect we had for avoiding paralysis and preventing an aggravation of my Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS).

Everyone involved with this procedure went to incredible lengths in order to accommodate my unique needs. The week before, Dr. Bowen, a fantastic and exceptionally compassionate anesthesiologist met with my mom and me for over two hours to come up with the ideal plan and to set arrangements in place. He spoke with a nurse anesthetist, Laura, about me, and she even went home and researched my conditions. Additionally I met with my surgeon, Dr. Molik, shortly before my recent medical trip to Chicago for a consultation so that when the time came to replace my line, all that was left to do was to give her office a call and they would put me on her schedule… And it’s a good thing, too! By the time I was wheeled back to surgery, my central line that was being replaced clearly wouldn’t have held on for even one more day. You see, after I was effectively knocked out, Dr. Molik removed the dressing on my line, and to her surprise the line fell right out in her hands! She said if I had done my typical weekly dressing change at home, I would have found myself in an emergency situation.

Following the surgery I was transferred to my own quiet little room where Laura stayed by my side for at least a couple of hours as she continued to administer ketamine so that I wouldn’t wake up quickly to a shock of intense pain! I couldn’t believe it. Really, everyone took such exceptional care of me. My post-op nurse, Claire, was ever so sweet. And there was some dude there named Spencer, and due to my mentally-impaired state at the time, I honestly have no idea who he actually was, but I do know that he was very, very nice as well. And in a fit of ketamine-induced whimsy, I declared Claire Marie, Spencer Allen, and Sabrina Giselle the three musketeers! Ah, the stuff of legend, folks.

When I finally awoke, I was surprised to discover that I had an extra appendage. In the past I have always had double-lumen lines, meaning I have had two tubes exiting the site on my chest. But when it came time for Dr. Molik to place the new line, there wasn’t a double lumen catheter to be had! Consequently she had to place a triple-lumen line instead. I was entirely nonplussed, though, because, um, hello… I WAS NOT PARALYZED! I could actually move!!!

Now, surgery is never easy on me. I couldn’t have stood up and walked out of the hospital that day… Trust me, had I not been so wobbly, I would have been doing the happiest of happy dances! But no, my muscle weakness and pain wouldn’t allow such whimsicality, but instead resulted in a short hospital stay. Central line placements are a breeze for most people, so when my nurse on the floor first saw me, she questioned, “So this is a good outcome for you?” Unless you have seen me in the hypersensitive state that comes along with my typical rigid paralysis, you simply cannot comprehend what a major improvement this is in contrast to what I usually experience when I undergo a procedure. So you can take my word that I was absolutely happy dancing in my heart.

My doctors meticulously documented all that was done so that we can recreate these exact circumstances anytime I need surgery. Overall, the whole thing was practically miraculous for me… And it was pretty much confirmation that my intense pain is indeed the cause of my rigid paralysis. So how many ways can I say it? I am deliriously delighted, entirely elated, over-the-moon overjoyed! Quite simply, God is good.

Now, what’s the latest scoop regarding my cantankerous arms, you ask? Well, I wish I could tell you that I’ve been making progress, but regrettably this is so not the case… Not for a lack of trying, though. In April I had a consultation with Dr. Lubenow, an RSD specialist in Chicago. He was a kind and intelligent doctor, but since our visit we have learned that unfortunately his hospital will not be able to offer the treatment I am needing. Nevertheless I am thankful for the advice Dr. Lubenow shared.

So where to turn next? Sometimes my shortsighted human perspective can set my mind to spinning itself silly! Naturally when I default to such a thought process I come up a bit short and haven’t a clue what to do. However, at the same time I am also earnestly praying for the Lord’s guidance, a much more effective means of finding direction, as is evidenced by God’s 100% success rate for getting me out of trouble in the past. When my family and I decided to transfer my local medical care to a different hospital a few months ago, it seemed like the craziest time possible to be making such a move; but in hindsight it is so very clear to see that God had been gently nudging us in this direction for quite a while. And as a result of that gentle nudging, I now have a fantastic hematologist, Dr. Rob, who is doing all that he can to help me from many different angles.

Thanks to the suggestions offered by Dr. Lubenow in conjunction with invaluable counsel and reassurance from Dr. Rob, my family and I finally have a tentative treatment plan for my RSD. I am a bit shocked to be saying this, but as of right now it is looking like in addition to trying ketamine infusions, I will also have an intrathecal pump implanted to consistently administer a muscle relaxant called baclofen into my cerebral spinal fluid. We believe that this multifaceted approach offers the most hope for relieving my pain and restoring function to at least my left arm.

There are still a handful of particulars to be addressed before moving forward with any treatment, so I would greatly appreciate your prayers for guidance, peace… And patience! The immense pain I’ve been carrying these past few months has been a serious test of my perseverance. I feel like I’m being stretched beyond my breaking point. So I guess it is a good thing I’ve always been flexible, huh? (Er, if we are going to be technical here, I am actually hypermobile in medical lingo.)

“… And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.” 

Romans 5:2-4

While her mommy was in the hospital, Alice Eloise was off on her own fun adventure, slumber partying it up with Aunt Krista, Uncle Tim, and Cousin Lulu.

But thankfully Alice Eloise and I were reunited at home just in time to celebrate my 23rd birthday! I wasn’t feeling up to any wild parties or anything, but I enjoyed a lovely birthday nonetheless. My “needs” have changed a lot in the past few months. Until the end of February my birthday list consisted of nothing but a ton of fabric for sewing. However, an unexpected turn of events (you know, the whole “arm thing”) would have made that a rather depressing birthday gift indeed… I was quite the one-handed seamstress, but my no-handed sewing skills are lacking (read: nonexistent). These days I am in need of pajamas and candles instead! And might I add that my family more than took care of these needs on my birthday.

Over the years my mama has observed how my heart gets to pitter-pattering for surprises, though, and she has been known to worry her sweet little mind over finding just the right way to surprise me. What she forgets, however, is that I am also very easy to please. One could easily lose track of how many times I use the word “love” each day. “Oh, I just love…Christmas trees, I just love… Tea parties, I just love… Buddy the elf”, and the random love list could go on and on. While I may say the word “love” often, I can assure you that I don’t throw it around lightly. But come now, is there really such a thing as too much love? I thought not. Consequently I believe that a loving heart is a happy heart! So one needn’t spend much time with me to learn what I like… Or “love,” as the case may be. And my mama spends an awful lot of time with me, so she has been known to pull off some highly lovable surprises.

When we were little ones, my big sister Krista and I received an American Girl doll for every Christmas, a most treasured tradition that continued until I was around nine years old. If one were to look at our dolls now, it would be easy to guess which dolls belong to Krista and which ones belong to me. Krista’s dolls are notably well-kept, with hair impeccably maintained to look almost like new. My dolls, however, might have done a few too many backflips at their imaginary gymnastic meets; the best of them were doomed to a fate of frizzy, tangly hair, and the worst of them were admitted to the doll hospital for a head transplant. Each and every doll survived, though, so what’s the harm? I like to believe that this just means they were very “loved”.

Every year American Girl designs a new doll to carry the esteemed honor of being the “Girl of the Year”. Each of these special dolls has her own unique personality sketch, and would you believe it? The Girl of 2014 is a darling blond-haired doll who happens to be a dancer and a seamstress to boot! Sound like anyone we know around here? She even wears her hair in the same style that I do!

So on my 23rd birthday, I was delightfully surprised to become the proud owner of an Isabelle doll! 

Don’t you just “love” her?!

The birthday fun doesn’t end here… Everyone’s favorite Double Doodle just turned three years old on May 22nd! My goodness, I can scarcely believe that my baby is already three! Sunrise, sunset… Sunrise, sunset… Anyone else a bit misty eyed? Anyone?

The question is how did Alice Eloise go from being this silly puppy…


To this little party animal…


To this service dog in training with a glimmer of mischief twinkling in her eyes…


To this incredible, reliable service dog?!

Aren’t I blessed that Alice Eloise has grown to be such a fine young lady? And as such, she more than deserved a special day devoted to nothing but her amazing self. Alice Eloise is the sunshine of my life… I celebrate that little lovey every single day!

Between April 17th and May 29th, my family had our springtime holiday season, celebrating Easter, a wedding anniversary, Cinco de Mayo, Mother’s Day, and 4 birthdays within our immediate family alone, 10 birthdays if we are counting cousins! Especially right now it is mind-boggling for me to think about how different my life is in comparison to the life I was living a short 365 days ago.

My parent’s wedding anniversary falls on Cinco de Mayo, so naturally I initiated a family tradition of throwing an annual fiesta!

But this year there was no fiesta. There were no chimichangas. No piñatas. No Ricky Martin. No dancing on the counters. ¡Ay, ay, ay! Livin’ la vida boring. Believe me when I say it was mildly tragic.

However, there is such a thing as too much fiesta loca, you know. Mother’s Day 2013 went down in the record books as “the Mother’s Day when the frog died, Lulu was hit by a car, and we still managed to get a perfectly splendid dinner on the table”. This past Mother’s Day, however, will forever be remembered (or forgotten), as “the Mother’s Day when we didn’t do much of anything, and actually really enjoyed it that way”.

So instead of bemoaning the capabilities and enjoyments of yesteryear that have since been lost, I am appreciating the newfound “loves” that God continually brings into my life. Heaven knows that each day manages to bring its own fair share of craziness anyhow.

You know what I’m saying? Don’t worry, be happy! Hakuna Matata! But even better than that go-to “problem-free philosophy” are the wise words of Matthew 6:34.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Let’s just delight in the serenity of the moment and admire the captivating flower blossoms from the garden, shall we?

 On that most elegant note, I must include a special and heartfelt thank you to my daddy. When I was younger and lacking in wisdom, I typically presented him with flowers to plant for Father’s Day, not quite realizing that, in essence, the gift was a source of manual labor for the recipient. Oops. And a few years back a stroke of brilliance allowed me to mastermind a truly inspired gift, a clock adorned with those darling “Mary Poppins” penguins, along with the catchphrase “It’s a Jolly Holiday with Larry”. Original and functional.

With careful consideration I concluded that this year a stepping stone personalized with my master gardener in mind would do quite nicely. The saying “Happiness is Blooming all Around”, yet another nod to the lovely cinematic classic “Mary Poppins”, couldn’t be more appropriate. You see, my papa has planted a majestically beautiful garden just to make me happy! I have found such delight in seeing a rainbow of brightly-colored flowers come to life in my very own oasis. Even my special Charlie Brown Christmas tree that looked positively poorly not so long ago has snapped out of its gloom, and now it couldn’t be happier! Mary Who? Only Larry Poppins could build a garden so practically perfect in every way!

Like these practically perfect pink peonies, for instance! Larry Poppins does nice work, but really I must give God the credit for creating such perfect beauty.

For me, viewing my garden is as lovely and idyllic as jumping into an enchanted chalk picture. Should I be surprised, though? It is a jolly holiday with Larry, after all… No wonder that it’s Larry that we love!

I know, I know… Enough “Mary Poppins” already. Maybe I should stop while I’m ahead, but… I hope that all of my dear friends are enjoying a chim chim cher-ee kind of day! Cheerio!

 

 

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15 Responses to “Love”-ing Life

  1. The Weintraub Family says:

    Great news and keep it coming.

    You are always Iin our thoughts and prayers.

  2. Tom and Jennifer Finley says:

    Glad for the good news. Hugs and prayers from the Finley’s! !

  3. Gail Czarnecki says:

    Such awesome news! Huge cyber hugs to you and Alice Eloise:)!
    Gail

  4. Love hearing about what’s been happening in your life, Sarah Kate! I’m thankful to God for the successful (and paralysis-free) surgery and for your continued optimism. Continuing to pray for your complete healing. As with all hard things, it helps to remember that we belong to God and He loves us more than we can comprehend.
    “Know that the Lord is God. It is He who made us, and we are His.” (Psalm 100:3)
    And, the American Girl doll was a perfect gift! My twelve-year old daughter was reading over my shoulder and though so, too! She hopes to never grow out of her love of dolls. I can totally relate and only a few years ago gave away my collection of pandas to my kids. It’s good to see them played with again!

  5. Allissa Rower says:

    So good to hear from you! I’m hoping treatment helps the pain and muscle spasms.

  6. Tamara says:

    That’s a supercalifragilisticexpialidocious post. only one thing you have wrong. There is never enough Mary Poppins.

  7. Angie Nelson says:

    You inspire me to be better! Thank you for sharing your journey! I consider myself blessed to know you Sarah. May God continue to be glorified in you and through you – as you gain patience daily on this journey.

  8. Uncle Terry and Aunt Lesia says:

    Love to read the stories you post! Good news on your latest procedure – continued prayers and love coming your way!!

  9. Cindi says:

    When I read your thoughts, you make my heart, smile very wide… Although, what our family is
    going through, currently is not in the physical health realm, but the psychological and emotional
    throes. Have you ever considered writing a book? Many times, I toss the idea around in my head
    about writing… Do I want to write about my love of animals, my wonderful family, life, my faith,
    etc.?! I have heard that your dad ( one of my most favorite cousins ) works many hours in your
    lovely yard and your pictures are beautiful. Thanks so much for sharing them!
    Love and God bless…Cindi : )
    Psalms 46:10 Be Still and Know That I Am God.
    My favorite Bible verse

  10. Sue Deist says:

    You are in my prayers every day Sarah. You continue to be an inspiration to me. Ruby is 4 now—where does the time go??

  11. Jeannie Westerfield says:

    So happy to know things are going well for you. God’s blessings to all the Frey family.

  12. Missy says:

    What fabulous news! I LOVE getting the email alerting me that there is a new post from you, and I LOVE LOVE a good report, and i LOVE LOVE LOVE the video and see in your family and Alice! You are soooo precious and such a blessing! Thank you for sharing sweetie, God bless your socks off, xoxoxo Missy McCoy (@maggiedoodlemccoy’s mommy)

  13. Amy says:

    Another awesome post! I always look forward to reading these. I’m so happy to hear about the new anesthesia protocol!! I know the “arm thing” has been a hard adjustment, but you’re doing so well with it – not that you have a choice, but I doubt many people have the grace to keep such a sunny attitude. Thanks for being my best friend and for setting a constant example for the rest of us of how to be a loving and patient Christian in every situation. <3

  14. I love this blog post so much Sarah Kate! I am really happy all went well on your surgery procedure and hope your arms will recover the motion soon. God bless you my sweet friend! You are always on my mind.

    PS. I love the Isabelle doll! :)