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!