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!

Posted in emergency, Prayer Request, surgery | Tagged , , , , | 14 Comments
Homeward Bound

I know that many are concerned about Sarah Kate so I wanted to provide an update. Her numbers are trending in the right direction… Enough so that the hope is that she will be able to go home today. Sarah received more blood yesterday, and her fevers are now low-grade. She is feeling totally lousy; but as long as she is stable, home is the best place for her to be. I draw Sarah’s labs every Monday, but it is reassuring that for the time being we will be checking them even more frequently to be certain that things are continuing in the right direction. I am confident that quiet cuddle time by the fireplace with Alice Eloise will speed the recuperation process better than anything else ever could.

I have to share a silly Sarah story that tickles me every time that I think about it. Those of you who know Sarah or who have followed her blog are privy to the fact that our girl is usually pretty sharp, as evidenced by her quirky, quick wit and whimsical storytelling. Typically nothing much gets by her, but HLH flares are not typical. In fact, Sarah probably won’t remember much at all about the events of this week after the fact. Her body is so very weak and tired, and that exhaustion affects her mind, too. So the other night while Krista was here visiting, she informed Sarah that the Royals were going to the World Series. Sarah did not respond until the next afternoon, when she giggled to herself and admitted that she had just figured out that Krista was talking about the Kansas City Royals. Instead, she had found herself hoping that the Cardinals would make it to the World Series so that her favorite “royals”, Will and Kate, would be traveling to St. Louis. I guess I should apologize to Sarah Kate for spilling this secret, but such cuteness just had to be shared.

God has seen us through this tough week… Now we are thankful for the blessing of going home.

Posted in HLH, inpatient, Reflections | 7 Comments
We Have an Answer…

Sarah Kate’s labs have confirmed that she is in an HLH (Hemophagocytic Lymphohistiocytosis) flare. She has had constant fevers since Saturday (some in excess of 105); so that, along with dropping blood counts and outrageously high inflammation markers, has left her feeling terribly sick. Sarah received blood today, and her doctors will now monitor her closely as they consider potential treatment options. They will likely start her on a medication that has helped to settle things down in the past. Given Sarah’s history of HLH flares, a bone marrow transplant would be a consideration; however, Sarah is just not strong enough for that to be a viable option. Other HLH treatments like chemotherapy and high-dose steroids are also believed to be too harsh for her, especially considering her chronic pancytopenia. Sarah’s doctors and nurses at Mercy have been incredible… Last night they transferred her to the PICU to keep a closer eye on her. We have been so very blessed by their devotion, kindness, and excellent care.

Before Sarah was transferred to the PICU, Alice Eloise’s Uncle Tim took it upon himself to bring her to the hospital to see her Mommy. It was so very sweet of Tim and absolutely wonderful medicine for Sarah.



Sarah looks darn good considering all that she has been through the past few days… But as her Mom, I can attest that those sick girl eyes speak volumes.

God provides for our every need, and you, dear friends, are among His very best blessings. Thank you for your continued love, support, and prayers. It is truly comforting to know that so many are supporting us in this fight.

Posted in HLH, inpatient, Prayers, please! | Tagged | 21 Comments
I Left my Creativity at Home, so this Title will Just Have to Do…

So October 3rd was pretty great. The week following? Hmm, not so much. The travel most enthusiastically kicked my booty. You know that saying, “nothing is impossible with God”? It’s true. Somehow I did indeed make it to Rhode Island and back. But I am pretty sure that pigs could fly more easily than I can, even when taking into account my advantage of having an airplane to help me with that endeavor.

Consequently my body has been angry all week, finally culminating with a high fever and a trip to the ER last night. I was admitted so the doctors could keep a close eye on me… And it’s a good thing, too, as my blood counts took a big hit in a matter of hours. We still don’t know what’s up. Could it be a Hemophagocytic Lymphohistiocytosis (HLH) flare? Sure. Kind of looking that way. Could it be sepsis brewing? Mhmm. A possibility but cultures have come back clear so far. Could it be Post Booty Kicking Syndrome (PBKS)? The NIH has yet to release any statistics on PBKS, but I think it is a reasonable addition to the suspect list in this particular case.

I know you’re anxiously awaiting the details of my Rhode Island trip, but for now I am just gonna have to offer an IOU. Capeesh? But in the meantime, could you please pray for me? I know that I can always count on you! Toodles!

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever.” – Psalm 73:26


Posted in emergency, inpatient, Prayers, please! | 16 Comments
It’s October 3rd.

I was 13 years old when “Mean Girls” was released in movie theaters. Since then, every year when October 3rd rolls around I find myself wishing I was in calculus class, with a hunky guy named Aaron sitting in the desk in front of me. In my daydream, Aaron would turn around to face me, asking me what day it was, to which I would eagerly reply, “It’s October 3rd”.

 This year, however, I have something much, much better to do on October 3rd.

Last Thursday I received an exciting surprise. I had been waiting to hear from a doctor’s office in Rhode Island to schedule a consultation. Well, Thursday they called to say that Dr. Chopra could see me either October 3rd or December 10th. There is a big difference between October 3rd and December 10th! So of course I snatched up the October 3rd slot!

Only one week to prepare for a trip to Rhode Island? Yikes! This may sound like plenty of time to some, but it has made for one wild week for me, and my body is not happy. To be quite clear, though, I am not complaining! Dr. Chopra specializes in my chronic pain condition, Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS). This appointment is truly an immense blessing. Dr. Chopra recently stopped taking patients, and his schedule is crammed full; but he felt my situation was urgent and graciously accepted my case.

Since I lost the use of my “good” arm in February, my parents and I have been searching so very diligently to find help as quickly as possible. The sooner this is treated, the more hope I have of regaining function of my only “good” arm. And one arm is infinitely more than zero arms! Sadly, just about all of our efforts in this regard have come up short. I am always careful not to get my hopes up. It’s a coping mechanism. If my hopes aren’t up, I can’t be let down. But still, I can’t help but be so very hopeful that Dr. Chopra is just the doctor I need to evaluate my complicated presentation and to help sort through my limited treatment options.

Dr. Rob ordered a blood transfusion for me this past Saturday so that I would be safe to travel. But even with that little boost I feel as though I am running on borrowed energy! And honestly, travel has become nearly impossible for me physically. However, God has clearly made a way for this appointment to come to be — So I know that He will somehow give me the strength to get there and back.

“For I can do everything through Christ, who gives me strength.” – Philippians 4:13

Alice Eloise will be waiting for me at home. My parents have had enough work cut out for them just arranging for the three of us to reach Rhode Island on such short notice. I am not sure we could manage getting one more person, be they human or canine, on the airplane so early tomorrow morning! But I happen to know from a friend that Dr. Chopra loves service dogs… So hopefully my Alice Eloise will tag along for my next appointment!

I would greatly appreciate prayers for safe travels, strength, and a brilliant appointment! I cannot wait to tell you all about it when I return.

5:00 is going to be here way too early tomorrow morning. So I am off to bed! Nighty-night and sweet sugar plum dreams, my lovely friends!

Posted in CRPS, Journal, Prayer Request, RSD | 14 Comments