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!