Tough Day, Resting Peacefully

Sarah’s surgery went well.  Dr. Molik is an incredibly gifted surgeon as well as a truly kind and compassionate caregiver.  We really cannot thank her enough for all that she has done to get the necessary arrangements in place so quickly and for her willingness to ensure that Sarah’s unique needs have been met.

The anesthesiologist was great, too.  He listened carefully and seemed to have a very good understanding of Sarah’s complicated circumstances.  Given that Sarah’s anesthesia protocol is not typical, we must realistically anticipate that a new doctor may not be comfortable following it.  And he was not.  But we do know that he did what he believed was best, and that is really all that we can expect.

Thankfully, Sarah awoke without paralysis … but very sadly she was in terrible pain.  They transferred her to the pediatric intensive care unit; and after several hours of trial and error, they now have her resting peacefully.  They ended up giving her a medication that she has never had and is only given in the ICU, so we hoping and praying that she will awake without complications and that this may be a good treatment option for her in the future.

So if you would remember Sarah in your prayers tonight, we would be so very appreciative.

Blessings,

Larry, Jeanne, & Krista

Posted in Pain, Prayer Request | 12 Comments
I’m a Dear of a Reindeer… Why Don’t I Fit In? – A Prayer Request

So where are we now? Well, to be specific, we are in Springfield, Illinois. And why are we in Springfield, you might ask? Why, we are on our next wild and crazy adventure, of course. Woohoo. Or, perhaps more accurately, boohoo.

But no, really it’s a blessing that I am here… But a rather roundabout blessing at that.

Let’s rewind a bit. Since February, my central line has gradually migrated out of place as the tissue around it deteriorated. So now I am looking at the same problem that has led to the demise of my last few lines: The cuff that keeps the catheter in and infection out has once again slipped outside of the exit site.

Last fall my beloved surgeon, Dr. Molik, transferred from Mercy in St. Louis to a different hospital. And while there are most certainly a number of other surgeons at Mercy, I am, as one might say, complicated. And so Dr. Chismarich, my palliative care specialist, has worked so diligently to find the right surgeon for me. The only remaining pediatric surgeon at Mercy is very busy since Dr. Molik relocated; and I am admittedly, yet unavoidably, a high-maintenance 24-year-old, so unfortunately he was unable to accept me as a new patient. Strike 1. Next, my parents, Alice Eloise, and I met with a very kind vascular surgeon. I simply loved him. But he only places Hickman lines rather than Powerlines, the type I have always had. Although I was willing to try a Hickman, he ultimately felt that it was too high risk for me. Strike 2. And the only doctor in the hospital who places Powerlines has an unwavering principle that he will not replace a line until it won’t function. He has valid reasons for this rule, but with me, nothing is quite so black and white. Strike 3. I’m out.

This central line of mine? It’s quite literally my lifeline. 24 hours a day, it is doing the very important job of keeping me kicking. If it were to stop working or to fall out entirely, I would be in a hypoglycemic crisis PDQ, with no access to my total parenteral nutrition (TPN) and medications to keep me stable. That’s all kinds of bad news I would much rather avoid.

Just as I was beginning to feel like I may as well join Rudolph the red-nosed reindeer and his dentist elf friend Hermey on the Island of Misfit Toys, God sent a spectacular blessing that rerouted those magical travel plans into a journey that was a bit more feasible.

We received an email from Dr. Chismarich, sharing the incredible news that my former surgeon, Dr. Molik, would be happy to do the surgery at her new hospital in Springfield. What a relief! Although it isn’t easy for me to travel that extra distance, there isn’t a surgeon in the world who I could trust as much as Dr. Molik. Awesome doctor, awesome person. I am so beyond grateful! And as for anesthesia? Dr. Chismarich sent all of the information regarding my magic protocol, so now I am just hoping and praying that the anesthesiologist will be comfortable administering it.

With Dr. Molik directing my care, I can trust that I will be well taken care of. But nevertheless, it is pretty unnerving stepping into a new, unfamiliar hospital for the very first time. So please pray for a successful surgery, compassionate doctors and nurses, pain control, and no paralysis! Thank you, friends!

And so that is the story of how we found ourselves here in Springfield. My surgery is scheduled for tomorrow morning, bright and early. Because we have to be at the hospital at the buttcrack of dawn, Mama and I are having a slumber party at a hotel nearby tonight. Otherwise we would have to rise and shine practically in the middle of the night to get here by 6 am. Sadly Alice Eloise isn’t tagging along this time. Although puppy love is the very best medicine, she isn’t allowed in the operating room and there isn’t much she can do to help me with postoperative issues. And at such times my family tends to be busy enough without scouting for Doodle potty opportunities. But I just can’t wait to be back home with my sweet puppy! Tomorrow my papa will be here as well, and I am particularly excited because my big sister Krista will be joining us, too! Since my surgery will be so early, it is doubtful that I will see those two beforehand. But if all goes splendidly, Krista and I just might be shopping online for our 2015 Christmas jammies post-op! ‘Tis the season!

*Sigh* I am really, really tired. And I would like to get a full night’s sleep before I take an epic nap tomorrow. And if that means going to sleep at 7:30, so be it! Sweetest sugar plum dreams to all, and to all a good night!

 

PS Happy 2 year Service Dog-iversary to my best friend! I love you with all my heart and even more, Alice Eloise!

Posted in inpatient, Prayer Request, surgery | Tagged , , , , | 8 Comments
Never Say Goodbye – A Thank You to Dr. Bob Arceci

I’m not so good at saying goodbye. Once you wiggle your way into my heart, I want to hold you there for keeps.                                     But these past few weeks I’ve been faced with a heartbreaking question:

How could I ever say goodbye to the man who saved my life? 

Our story begins in June 2011, when my parents and I found ourselves in Baltimore. It had been a tough year for me, with one of the biggest blows being severe and enigmatic hematologic complications that nobody could explain. With this addition to my lengthy list of eccentricities, I had all the earmarks of an underdog. And soon enough I was beginning to think that nobody wanted to deal with an underdog. The major medical center in my area turned me away, saying I didn’t have leukemia or lymphoma, so they couldn’t help me. So there we were, sitting in the pediatric hematology/oncology clinic at Johns-Hopkins, on what felt like our zillionth-and-second medical trip. We were in for quite a surprise… This visit would be entirely unlike the zillion-and-one before.

In walked Dr. Robert Arceci, with a sweet smile on his face and a twinkle in his eye. Soon following the “how do you do’s?”, Dr. Arceci apologized if he seemed a bit groggy, as he had spent the previous night on a plane from China, heading straight to work upon landing. I never would have guessed, what with the twinkle in his eye and all that. And so the appointment went on, four hours long, revealing important answers I hadn’t been so sure were even out there. And, incidentally, my heart positively melted on that fine day when I met Dr. Arceci… He was just that lovable!

I soon learned that Dr. Arceci was a team player, never hesitating to pick up the phone to make a few necessary calls in order to bring together a team of experts who could work together in an effort to give his patients the best care possible. He had earned the respect of doctors from all around the world and his list of contacts was vast. Dr. Arceci opened the doors I wasn’t able to myself, setting me up with a specialist close to home who could keep an eye on me. But Dr. Arceci assured us that he would gladly direct my care from a distance, and if ever my needs could not be met locally, he would bring me back to Baltimore immediately.

As we were heading out the door, Dr. Arceci was genuinely concerned for our safety, inquiring about our lodging and how we planned to get there. You see, by this time the sun was setting, and Dr. Arceci knew too well that you don’t want to take a wrong turn in the big city after dark. The week before, he was riding his motorcycle to work, just as he did everyday. But on that particular day, poor Dr. Arceci was mugged! For such a kind and gentle man who was helping so many people to be met with such cruelty was very sad to me… I have always counted it as a real blessing that he found his way safely out of danger’s path.

I returned home with a diagnosis of Hemophagocytic Lymphohistiocytosis (HLH), a finding that would soon save my life; just two weeks later, I landed in a local hospital, very acutely ill. I had the doctors scratching their heads, and without the guidance of dear Dr. Arceci, you wouldn’t be hearing from me today. 

Earlier this month, on June 8th, my heart was shattered when I learned that, while Dr. Arceci was riding his motorcycle to work, he was killed by a hit-and-run driver. Even now my mind cannot process how this could even be possible. He played such an integral role in my care, helping us find direction when we had no idea which way was up. It seemed that Dr. Arceci was never more than a few moments away. He could be across the world, day or night, and yet anytime we emailed him, within minutes we could almost always find a thoughtful response in our inbox, signed “best wishes, Bob”. It was such a comfort simply knowing he was here for me… So it just doesn’t seem real that he isn’t here anymore. 

But this is not a story about my heartbreak over a tragic accident that took the life of a remarkable person, an irreplaceable friend. It isn’t about how life isn’t fair, how bad things happen to good people. Such an outlook simply wouldn’t fit in a story of sweet Dr. Arceci. He witnessed the unfairness of life every single day as he encountered the devastating realities of childhood cancer. Dr. Arceci never allowed that to break his spirit, though, instead smiling through the tears and channeling that pain to empower his fight against cancer all the more. And so this is a tribute and a thank you to the inspiring man who has left behind a legacy of hope.

Dr. Arceci was so truly passionate about helping sick kiddos in a life-changing, life-saving way. He was respected as an international authority in pediatric oncology, especially in the diagnosis and treatment of leukemia, histiocytic disorders, and high-risk sarcomas. At different times throughout his career, he served as director of pediatric hematology/oncology at Cincinnati Children’s Hospital, Johns-Hopkins, and finally Phoenix Children’s Hospital. His Emmy Award-winning documentary, A Lion in the House, touchingly captured the devastations of childhood cancer. When he transferred to Phoenix in 2012, he helped found the Ronald A. Matricaria Institute of Molecular Medicine where he directed groundbreaking research in realtime genomics, working to optimize and individualize cancer treatment. His accomplishments were many, far more than I could fully list. My family and I often wondered if Dr. Arceci ever slept! Basically, he was one sensational guy.

At age 65, Dr. Arceci was not slowing down in his fight against pediatric cancer; rather, that fight continued to evolve, taking on new forms as he worked to beat diseases that have taken far too much from far too many. When he relocated to Phoenix to direct the genomics project, he told us that it was sure to be quite an adventure that would be full of challenges, but full of potential as well. Dr. Arceci wasn’t afraid to undertake such adventures, though, because his career was not about fame or fortune for himself… It was about saving lives. He took in those underdogs whom he realized other doctors either couldn’t or wouldn’t accept, making him one of the few who were brave enough to help kids with histiocytosis and very rare forms of cancer. Did you know that in the past couple of decades, there have been dismally few advancements in treatment protocols for most pediatric cancers? Dr. Arceci wanted to change that, knowing that a new approach must be taken if progress was to be made. He was continually searching for a cure… And ultimately he viewed molecular medicine as a “game changer” in optimizing diagnostics, treatment, and prognoses. Realtime genomics is particularly promising for children and young adults; it is believed that because these patients become sick at such a young age, the cause likely has a genetic factor. Dr. Arceci’s goal was that with answers found by unlocking genetic code, someday doctors may be able to detect these devastating diseases earlier — Or even to prevent them altogether. Dr. Arceci’s enthusiasm was incredibly uplifting. He had such hope for the future, such hope for a cure. I know that Dr. Arceci’s legacy will live on in those who saw that hope in him. His search for that cure will continue in the work of so many people he inspired.

When I think of Dr. Arceci, the word “love” is the first that comes to mind. To know him is to love him, because he so clearly loved with his entire heart. And God loves love. The Lord blesses each of us with gifts — And we can use those gifts in such a way that allows us to be a blessing to others in turn. God blessed Dr. Arceci with a brilliant mind, a humble spirit, and a big heart, overflowing with compassion and love. With these gifts that God granted him, Dr. Arceci blessed countless people. He was the closest I’ve ever known to a guardian angel on earth.

“Each of you has been blessed with one of God’s many wonderful gifts to be used in the service of others. So use your gift well.”  - 1 Peter 4:10

So… How could I ever say goodbye to my hero, Dr. Arceci, the special man who blessed so many? Graciously the Lord has given us a beautiful solution to what seems like an unanswerable question: Jesus gave us the best gift of all when He sacrificed His life so that, so long as we accept the salvation He has offered, we can share eternal life with Him. 

And so, Dr. Arceci, we never need to say goodbye. It’s just love you, thank you, and see ya later… Next time, in heaven. 

For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life.” – John 3:16   

Posted in Awareness, genetics, HLH, Reflections | Tagged , , , , , | 5 Comments
Do-Re-Mi-Fa-Sol-La-Ti

We all know what they say about the “very beginning”: It’s a very good place to start! Or maybe just Fräulein Maria says that? I don’t know, but I believed her and I’ve always felt it was sound judgment. I’m going to have to be a rebel today, though, and start right in the middle. Trust me, no matter how much time you have, you don’t have enough time to read the whole story from the very beginning. I keep promising I’m going to give you all of the details about everything that has happened since October. My life has been rather unconventional lately, though. I’ve encountered a whole lot of punches, and I have had to roll with every one of them. It’s all such a jumble, as a matter of fact, that chronology does not seem to have all that much meaning any longer. So let’s just get going, right in the middle, shall we?

Last time you heard from me, I was off to the hospital for an MRI. Since my last big HLH flare, I’ve been having very serious hypoglycemia. While I was inpatient this past December, we were surprised to discover that my cortisol was at a critically low level. I practically begged the doctors to allow me to return home to my beloved Christmas tree, but it was simply too dangerous for me to be anywhere but the hospital until this had stabilized with treatment. In the meantime I was well taken care of — I had my darling Doodle service dog Alice Eloise, and one of my favorite nurses, Erin. What I didn’t have was a hairbrush. But did it really matter? My puppy and my nurse certainly didn’t mind my wild hair! Especially in the hospital, a little bit of kindness goes a long, long way.

Serology testing sent off during that hospital stay later revealed that my pituitary gland is not working properly, necessitating an MRI for further information.

The good news is, there is no brain tumor pressing on my pituitary gland! So what does this mean for me? We don’t have a definitive answer to why my cortisol levels dropped so much, so suddenly; but our best hypothesis is that my HLH damaged my pituitary gland. I continue to require my TPN (total parenteral nutrition) infusing 24/7 in order to keep my blood sugar stable, and the endocrinologist thinks I will likely require treatment for the rest of my life. Of course this isn’t exactly pleasant, but even so, I am thankful these interventions are available to save my life.

The bad news is, the entire MRI procedure (or, more accurately, the anesthesia involved in the matter) was a complete disaster. The day before we had been assured that all the arrangements had been made for my magic anesthesia protocol. We were told that there was even a room in the PICU with my name on it so that all of my unique needs could be met in the night following.

So when the anesthesiologist walked into my prep room and asked, “How little do we have to do to get you through this MRI?”, I felt quite shaken. You see, it takes rather a lot to get me through any procedure. But this guy just wasn’t going to have any of that. A quick call to my palliative care specialist later, the anesthesiologist agreed to start out with my protocol, and then see how it goes. This was more than a little worrisome for me… I mean, I wasn’t going to be awake to “see how it goes”. That was on him. But what was I to do? As much as I may have liked to, I simply could not demand to be assigned a new doctor right then, right there… Could I?

When at last I did awake, I was not even slightly surprised to find that the anesthesiologist abandoned the protocol entirely. He reportedly told my parents that I would be out of there by 5 o’clock that evening, an assumption he made before I was even conscious. Soon enough, however, it became quite clear that he was mistaken. At this point in time, he felt it appropriate to ask my parents “how and when they would know that I was ready to go home”… After all, wasn’t I inpatient for days following a simple surgery in December? You know, the hospital stay when I was begging to be released so I could go home to my Christmas tree?! Was he, perchance, insinuating that I had already outstayed my welcome at the hospital? Why yes, I do believe he was. Ugh! Anyway, I needn’t bore you with all of the details. But my body was beyond angry. It is so truly unfortunate; things did not have to be that way. It could have gone much more smoothly for everyone involved, if only he would have listened.

The cherry on top of the whole fiasco was served up the next morning when I was informed that the pediatric anesthesia department wanted nothing more to do with me ever again. And given my age of 23 years old, they are allowed to pass me along, no questions asked. Thankfully Dr. Chismarich, who is my palliative care specialist and one of my foremost superheroes, stepped in, trying to make things right. She has been working so diligently to firmly document every detail of my anesthesia protocol, and to establish a team including an anesthesiologist and a surgeon who would be willing to take on my special case any time I may need them. Because, as you likely have noticed, surgical procedures are always an imminent occurrence in my life.

Let us hope, however, that I can avoid the need for such accommodations for at least the next month or two… There will be plenty going on, even if my body does behave itself, as my mama is having her hip replacement surgery today! She has known since she was a teenager that her hip was a problem. Her doctor had told her that she’d be a crippled adult, but we have been very blessed in that, although she has lived in a fair amount of pain for years, she hasn’t been too terribly limited until these past few months. But then suddenly it was as if a flip switched and she could barely walk. Of course this had to happen when my papa was out of town, and I myself was having surgery a couple of days later. I had a walker overnighted so that we could find a way to not only get around the house, but to get around the hospital as well.

But alas, the walker did not make it in time! At least, it wasn’t supposed to. We have a sweetheart of a UPS driver, though. Every Friday I receive giant, heavy boxes of medical supplies, and our UPS friend, Pete, kindly carries them into the foyer for us. Funnily enough, Pete is one of Alice Eloise’s best pals! As a matter fact, she didn’t used to be so crazy about him… After all, he does drive that scary big truck. But once she gave him a chance, she became entirely smitten. And now Alice Eloise and Pete play fetch every time he swings by our house with a delivery! They’ve been known to play some truly fantastical games of fetch, too, beginning in the foyer and stretching all the way across the house into the family room. And on days when there isn’t a box for us on that no-longer-scary-big truck, Alice will wag her tail by the window as Pete drives past our house, oftentimes honking his horn as if to say, “See ya next time, Alice Eloise!” It’s a friendship for the ages, iconic as Charlie Brown and Snoopy. Anyway, Mom’s walker was not supposed to arrive until the evening after my surgery, which would simply be too late. But Pete so kindly met my mama downtown so she could have her walker for our trip to the hospital. Aunt Lesia and Uncle Terry assembled it for us in a jiffy, and poof! We were out the door right on time with not a moment to spare!

We have had to adapt quite a lot these past months, but, largely in thanks to that handy dandy walker, we have found ways to manage. But, of course, Mom is feeling very ready to have that new hip. Please pray that her surgery goes well and that she is feeling much better in no time at all!

And, if you could, please add one quick request at the end of that prayer for me. Because I cannot use my arms, I am unable to do much of anything for myself; but of course I do require such a lot of care each day, and my mama has been my caregiver since Day 1. It has been quite complicated piecing together all of the arrangements necessary to be sure I will be taken care of during my mom’s recovery. We had a lot of trouble finding an agency whose nurses have the right qualifications to handle my TPN and IV medications, but at last we have everything in place. It is naturally a bit unnerving for me to rely on new people for all of my needs. But I am trying to imagine this adventure as a way to make new friends! One can find a silver lining in nearly any situation, after all!

Even with the help of the agency, there were still quite a handful of time slots left unfilled on the calendar. I am truly blessed to have such kind and caring family who have committed to filling in each of those empty spaces. All of my special helpers know who they are, and I thank them dearly!

Believe it or not, Mama’s stay in the hospital will make for the very first time we have spent a night under two separate roofs in over five years now. I must admit that, although I will most certainly miss her while she is away, I am still psyched to slumber party it up with my big sister Krista! Don’t worry about me, Mama. I will be just fine! I love you!

So there you have it! The latest chapter in the adventure that is my life. And what kind of wild shenanigans will I find myself wrapped up in next time? Hmm… I guess you will just have to tune in to find out! Toodles, friends!

Posted in HLH, paralysis, Prayer Request, surgery, Uncategorized | 21 Comments
Merry Christmas and a Crazy New Year – My First Prayer Request of 2015

I have come to find that all of the leftover craziness of 2014 has somehow followed me into the new year. Such a lot of craziness, in fact, that a journal post to bring everybody up to date has been in the works since October! But the chaos has just piled up on top of itself over and over again, growing to the point that I suspect it may fill a series of blog posts. I simply have so much I need to share with you!

Just not right now…

Rather, today I bring you my first prayer request of 2015. Ever since my HLH flare in October, I have been experiencing extreme hypoglycemia. It has been terribly challenging to manage; even with my TPN (IV nutrition) infusing 24 hours a day, my blood sugar still tends to dip. So when I was inpatient last month, the doctors ordered some testing in an effort to determine the cause of this hypoglycemia, revealing that my cortisol levels were dangerously low. Since then we received the results of more tests that had been pending, and it has become clear that my pituitary gland is not doing its job, explaining the lack of cortisol in my body.

Now look sharp, this is where you come in! Today I will be having an MRI to check out this faulty pituitary gland. And… Why exactly is this a big deal, you ask? Well, quite simply it would not be anything but a minor annoyance for most people. But due to my body’s “unique” way of dealing with pain and sensory input, this procedure requires general anesthesia for me. Thankfully I am immensely blessed to have the most sensational palliative care team in the entire world; they have pulled together the arrangements for my magic anesthesia protocol, which is an incredible relief. We all know that I have a way of being unpredictable, though, so I really need your help, too! I would be ever so appreciative if you could please remember to keep me in your prayers today. We are talking all sweet sugar plum dreams, and absolutely, positively, no paralysis!!!

Keep an eye out for a non-emergent blog post sometime soon! Let’s see if life can slow down just enough for me to share the jolly, albeit chaotic, details of my favorite time of year! Alice Eloise and I hope that all of our dear friends had a most blessed and magical Christmas, and a happy New Year, too.

And now, I am off to count some sheep! Or perhaps I should count Doodles instead?

One… Two…

A Very Doodle Christmas

Posted in inpatient, ketamine, Pain, Prayer Request, Uncategorized | 13 Comments
An Update from Mama

After a longer-than-expected inpatient stay, Sarah Kate was released from the hospital yesterday afternoon. I apologize for not providing an update sooner but exhaustion and craziness have gotten in the way.

Sarah’s dad and I were extremely relieved when we received word from the recovery room that Sarah was not paralyzed following her central line placement, but sadly we would soon come to realize that things were not going well for her. When they called out they had told us that she was in a lot of pain and that once they got that under control they would be transferring her to a room in the pediatric inpatient unit. Upon her arrival upstairs, her pain made for a very traumatic introduction to the floor nurses; but thankfully they knew she was in trouble and acted accordingly. Although it was nearly 11:00 p.m., Katie, a member of Sarah’s palliative care team, made an emergency trip to the hospital. It was decided that Sarah needed to be transferred to the PICU where she could receive ketamine and be monitored closely in an effort to lessen her pain. It was an overwhelming night … terrible hallucinations (from the drugs) and a scary incident when she stopped breathing; but we could not be more thankful for the amazing efforts of the doctors and nurses.

Prior to the procedure, the anesthesiologist shared that he would be tweaking Sarah’s special protocol from what had been done when all went so very well in April. He believed that Sarah did not need so much ketamine and said that he would compensate with more pain meds. Given that he was still planning to administer more than 8 times the ketamine he would typically use, we were reassured that it would be alright. He was a fine doctor but hindsight now tells us that approach was a mistake.

Bright and early the next morning, Larry and I made a quick visit to the orthopedic surgeon. It has been decided that I will be having hip replacement surgery just as soon things can be arranged. I absolutely never leave Sarah when she is inpatient, but I was relieved to know that she was in good hands. Brother-in-law Tim came to Sarah’s rescue… She has told me SEVERAL times just how well Tim took care of her while I was gone. Tim also shared what an appreciative patient Sarah is… She never fails to say “thank you” for even the simplest acts of kindness.

Grandpa brought Alice Eloise to see us at the hospital on Saturday. Her love is such a blessing for all of us… There is really nothing better than puppy love.

Since Sarah’s HLH flare in October, she has been having serious problems with hypoglycemia. It was thought that her liver needed to restore its reserve of glycogen, but weeks later it has still been a problem despite keeping her hooked up to her TPN 24/7. So while she was inpatient following her surgery, an endocrinologist was consulted. Testing has revealed that Sarah’s cortisol levels were dangerously low. It will be a few weeks before we know if this is primarily caused by her adrenal glands or her pituitary gland. Sarah was apprehensive about starting the medication as our family has a scary history associated with steroid use; but her doctors explained that there is really no decision to be made as Sarah would not survive if she didn’t begin treatment.

It is so very nice to be home once again. I am sure that you will be hearing from Sarah Kate sometime soon, as she always has her own unique perspective on life. Right now she is struggling immensely in ways we wouldn’t have anticipated. Please pray that we may soon find the cause of these new symptoms so that we can develop a plan to help our typically spunky little Christmas elf feel like her merry self once again.

God hears our prayers and those of so many of you who are praying for Sarah. We are forever hopeful that He may have a miracle in store for her. Christmas brought us all God’s greatest gift and miracle when our Savior Jesus Christ was born… And it is His love that continues to supply us the strength, faith, and hope we need.

Merry Christmas to each of you. May you, too, be filled with His love.

Posted in inpatient, ketamine, Pain, RSD, surgery | Tagged , , , , , | 12 Comments
Shoutout from the Whirlwind — A Prayer Request

Hi friends! It’s just me, reporting from the twister that swept me away a couple of months ago. Newsflash: That aforementioned twister has not yet been so kind as to set me back down on solid ground, no matter how politely I tap the heels of my ruby slippers! But I must take a moment to shout out from my whirlwind with a prayer request. It appears as though I’ve found myself in a bit of an emergency once again. Surprise, surprise.

Some of you may recall that I have lost two central venous catheters (CVCs) this year, one in February and one in April. It seems that my body is having trouble holding onto central lines. This complication can sometimes come along with Ehlers-Danlos, my connective tissue disorder. Dr. Malik, my surgeon, did beautiful work in placing my current line, stitching it in impeccably so that it could last me as long as possible. However, for a while now we have noticed it slipping out of place, gradually becoming more and more problematic until finally this week it stopped offering blood return. Ruh-roh! This is most certainly a predecessor to even more significant issues that could follow any minute, so I’m just thankful that this line is still infusing my TPN and IV meds. But this is a limit I simply cannot push. Consequently it is necessary that I have a new CVC placed even sooner than pronto!

Because of my unique needs it surely isn’t easy to hastily arrange a surgery. We have run into some complications because Dr. Malik recently left the hospital, leading to the more-difficult-than-anticipated task of tracking down the best doctor for the job. But one of the brightest silver linings of my recent HLH flare was that I had the pleasure of getting better acquainted with my palliative care doctor who was acting as my hospitalist while I was inpatient. Dr. Chismarich is truly a remarkable doctor in every way. Somehow she managed to pull together all of the bits and pieces necessary for my procedure. And take my word, there are A LOT of bits and pieces. Now that all is set in place, I will be having my surgery today at 2:30.

That’s not all. My mom has been a candidate for a hip replacement for quite some time. But as my caregiver, she has pushed back this intervention for as long as she could, waiting for a calmer time when my health might reach a better place. Eight years later, that time still has yet to arrive. But ready or not, this week rolled around and my mama’s hip decided it has just about had enough. Shazbot.

Wait, there’s more. With Mama barely able to walk, we clearly needed some help. But my daddy has been out of town on business. Although he returned to St. Louis late yesterday evening, he had some pretty close exposure to the flu while he was away, meaning he has to keep his distance from me until we know he is all clear. And even my big sister is out of town for work this week, which happens once a year at most! But thank goodness Aunt Lesia and Uncle Terry live just down the street; and honestly, I can say with full certainty that there is no way we could make it through this fiasco without them. They so kindly drove us to St. Louis for a consultation with a prospective surgeon, which incidentally was cancelled by his office just as soon as we pulled up at the hospital’s valet parking pavilion. Alice Eloise and Uncle Terry have had plenty of bonding time as he has been on, um, “doggy duty” duty. And with Aunt Lesia’s help I had a much-needed shower and even some impromptu dental work. It’s been quite the adventure! Or misadventure, perhaps? Either way, we still have some major details to figure out for when my mom has her own surgery; but thanks to the Frey family down the street, by golly, I think we just might survive this week yet!

And hey, you! I could use your help, too! Could you please pray that my surgery goes smoothly today? For those of you who are new here, I have a history of paralysis following surgery, a mystery that took far too long to solve. I wish I could say that a fair bit of sleuthing was all it took to find a solution, but the price tag was quite literally my left arm. In February I received so little anesthesia for a procedure that I was aware throughout. This was a frightening experience to be sure, but because I was awake I had the opportunity to finally learn that my paralysis begins when the analgesic effect of the anesthesia ends, inviting my intense pain to hit full-force. Unfortunately my left arm has yet to awaken from the subsequent paralysis. But this incident led us to the development of my own special, detailed anesthesia protocol that successfully evaded my paralysis when I had my last procedure. Please, please, please pray that this protocol is once again the magic ticket!

Now, I’ve got a big day ahead of me, so I’d better boogie. Toodles!

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