Treat Every Day Like Christmas – My 2015 and a Prayer Request
Christmastime is here! It is so very magical – And even more so very miraculous. Each day we see how the world is full of chaos, fear, pain, heartbreak... Full of imperfection that only continues to grow. But somehow on Christmas Day, the world seems to stand still in the most perfectly imperfect way. I think perhaps this may just be the feeling of having Jesus squarely in the center of our lives - A focus we should really hold onto everyday.  We can be facing all kinds of trouble, but even when facing such challenges, it isn't so difficult to see the beauty in life when we place our faith in God. 

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." - John 16:33

2015 reached a new level of crazy for my family and me! And because of that aforementioned craziness, I haven't always been the best at updating my blog. So here is a brief (in Sarah Kate terms) recap of the happenings I have yet to share from my 2015. One of our biggest undertakings was my mama's hip replacement. This was rather intimidating, as Mama is my primary caregiver. And I do require quite a lot care, you see. To be honest, it was difficult to imagine how we could ever pull off this endeavor. But we had to. And we did!  We are immensely grateful for each and every person who helped us. We never could've made it through without every single puzzle piece falling into place at precisely the right moment; God is quite the puzzle master, isn't He? Although it was rough going for a bit, now my mama is feeling so much better. She's a'walking like a supermodel. Well, almost! Then in April and May we had our annual family birthday season. This year I received a very special birthday present. My parents had all of my childhood home videos transferred to digital format so that I can watch them anytime I want to. And as it would turn out, I want to watch them every single day! What a joy it has been to relive those precious memories in a way... Oftentimes I want to Blue Skidoo right into the video! Considering how much has changed over the years, at the same time it is funny to see just how little as changed, too. It would appear that I have always abided by Rule 3 of The Code of the Elves: "The best way to spread Christmas cheer is singing loud for all to hear." My next big adventure took place near the end of July when I needed a new central line. I found myself in a bit of a pickle, as the local surgeons had reservations about doing the surgery themselves. But thankfully my surgeon who transferred to another hospital last year came to the rescue. Dr. Molik is quite the superhero. But nevertheless, it is always rather unnerving walking into a new hospital, relying on specialists who don't even know me to call the shots when complications inevitably arise. But thankfully my concerns proved to be unwarranted. The doctors and nurses were incredible. I woke up following surgery rather distressed and in pain, but the anesthesiologist and PICU doctors were so very diligent, never giving up until my nervous system finally settled down with sedation. From there it was comparatively smooth sailing! My big sister Krista and I had ourselves a hospital slumber party. But shucks, it was probably pretty boring for her, considering I was entirely asleep. We didn't even get around to playing truth or dare. I am such a party pooper. The next day I was in for the most delightful surprise I have ever received in a hospital. Two miniature horses stopped by for a visit! Their names were Bailey and Jasper. I was instantly smitten. The horses' human made me aware of the various ways miniature horses can be trained to be service animals. Some mini horses even sleep in their human's bed! I know what I want for Christmas...

In September I enjoyed one of the most spectacular days of my entire year. To celebrate my mama's birthday we went to the zoo!

As you may have already gathered, I am positively wild about animals. But it is a very rare treat for me to go to the zoo; once I make the car ride there, I am feeling too sick and exhausted to even enjoy my time there. So instead we made a weekend of it, staying at Krista and Tim's house which is just a few minutes away from the zoo. And what a delightful weekend it was!

Alice Eloise had an entirely new adventure on her very first trip to the zoo! Initially she only noticed the many humans who were smiling at her. But upon reaching the giraffe and ostrich exhibit, her ears perked up slightly in such a way that led me to believe she was thinking, "Wow. I have never seen such silly-looking dogs before!"

However,  none of the animals seemed to notice Alice Eloise. That is, until we walked through the sea lion tunnel. A couple of sea lions swam to look at Alice Eloise through the glass. I was happy to see that they seemed to like her, and she liked them too; I didn't want to upset anybody. But then a cranky sea lion swam up to Alice Eloise and growled at her, at which point we left. Not many Midwestern dogs can say they've had an encounter with sea lions!

Not 15 minutes after we returned home from our weekend away, we had to call an ambulance to take me to the emergency room. I had an intestinal obstruction, which ended up making these last few months extraordinarily complicated. The obstruction was removed, but then the week of Thanksgiving I was obstructed once again. We got me through the immediate crisis, but the threat is still ongoing. We needed to develop a preventative plan. And so today I will be having a gastrojejunostomy (GJ) feeding tube placed. Although it has been a long while since I was able to eat, I have never had a feeding tube. Rather, for the past five and a half years I have been reliant on total parenteral nutrition (TPN), meaning I receive all of my nutrition intravenously. TPN was never the plan because it holds some scary risks. Quite simply our bodies were designed to be fed through our GI tract, not through our veins. But a few years ago when it became apparent that I could no longer take in adequate nutrition naturally, an x-ray revealed that the isotope from my gastric emptying study four months prior was still in my system. This finding made it quite clear that my digestive tract paralysis is too extensive for me to tolerate tube feeds as planned, so I have to resort to TPN instead.  It is a blessing that I have made it this far without a feeding tube; it is exceptionally unusual for somebody to be TPN dependent as long as I have without having a tube as well. There are a handful of different types of feeding tubes, each with their own purpose. In fact, not everybody with a feeding tube uses their tube for feeding. My GJ tube will have two ports: one to access my stomach, and the other to access my jejunum. With this tube I will be able to administer medications directly into my intestine to help prevent further obstructions, and I will be able to vent my stomach for relief from other GI symptoms, too.  I am very seldom nervous, but I am actually quite worried about how my body will handle this surgery. So please, please, please remember me in your prayers! Please pray for strength, courage, and optimal pain control. Thank you so very much, friends. Once I have recovered from my GJ tube surgery, I will be up against even more challenges. Firstly I will be needing yet another new central line. And then another unexpected surgery is ahead... We were recently surprised to learn that I need my wisdom teeth removed. Years ago we were told that this would not be an issue for me. But no! They simply came back to bite me a bit later in life. ¯\_(ツ)_/¯ But you know, I do have something positively lovely to look forward to... Christmas, of course! We are hoping to go straight from the hospital to Krista and Tim's house to stay for a few days so that we can enjoy an extended jolly Christmas celebration together. I am pumped! Our family has already received the darlingest Christmas present imaginable: I have a new baby nephew! Krista and Tim are overjoyed to be parents, and Miss Lulu has adjusted beautifully to being a big sister. Our sweet Everett was born on Thanksgiving, and he couldn't have a more appropriate birthday as he is our answer to so very many prayers. Our hearts are as happy as can be! While 2015 was a year of many challenges for me, God has been ever so gracious by balancing out those challenges with incredible blessings. On the tough days, I do just as my friend Buddy the Elf advises: "Treat everyday like Christmas!" In doing so, I am reminded just how much Jesus loves me. Merry Christmas, everybody! See ya next year!

 "May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope." - Romans 15:13

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God Only Knows

Sarah Kate is a very complex girl.  We came to the realization some time ago that there is no one anywhere who can fully understand or explain all of her very complicated medical presentations.  In other words ... God only knows.

But we are very thankful that He, our loving God, has lead Sarah to some truly brave, good people who willingly step outside the box to help.  Because of their efforts, Sarah is resting now, which will allow her to sleep through her very acute post-op pain.   As Sarah’s doctors contemplate how best to address some additional concerns, we would surely appreciate your continued prayers.

In spite of it all, I am pretty certain that Sarah will manage to make merry as we joyfully celebrate Christ’s birth.

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I’ve Got Some Splainin’ to Do – A Prayer Request
Hi friends! So I know I have some splainin' to do. And, believe it or not, I actually have quite a few fun things to share! If only my body would give me the time to rebound from my medical crises enough to do so. You may recall that last time you heard from me, I had an intestinal obstruction. Well, here I am now, obstructed once again. Ruh roh! It has been a long, painful week, but today I am finally having surgery to remove this obstruction. These things are always tough for me, so I would greatly appreciate your prayers for a smooth procedure as well as adequate pain control post-op! I'm looking forward to returning home to celebrate my very favorite time of year… CHRISTMASTIME! I simply love holidays! It has been a year of many challenges, but also one of many blessings. Hopefully I will be able to share all of those joyful silver linings with you very soon!
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Thanks …
We are both relieved and thankful that Sarah’s GI obstruction has been successfully removed.  She is now resting ... (well, more like sedated) which is a huge relief after watching her in such terrible pain today.  Seeing our typically optimistic, cheerful Sarah feeling sadly defeated is tough stuff, but I am pretty certain that very soon I will be tucking her in for the night and she will again be asking me ... “So, what was good about your day, Momma?”  This is her nightly routine, and it continually amazes me as Sarah always goes on to share her own very long list of “good” things. Sweet dreams and many thanks for all the love, support, and prayers.  
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“Many a precious prayer has been said in a second.” … Catherine McAuley
Each time I walk through the lobby here at Mercy Hospital, these words on one of their banners speak directly to my heart.  I truly love and appreciate them because my prayers are often momentary, lacking in any semblance of eloquence or formality ... as I am often too overwhelmed and tired to offer up much more. We would very much appreciate your precious prayers tomorrow as Sarah will be undergoing procedures that are sure to be stressful and physically challenging for her. On Saturday, Sarah was telling me that a “fun” blog post is overdue and that she planned to work on one this week.  But as is often the case, plans are made only to be changed so for now that will have to wait.  In the meantime, I am sharing a teaser of totally nonsensical things to come … and  I can attest that Sarah Kate has several a silly tale to tell. Alice Eloise Service Dog at the Zoo Thanks as always for your love and support! Much love,  Jeanne
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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!
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