Unzips Pants Here We Go Again
Just when we experience like life is finally starting to slow down, like we tin can actually catch our breath…. BAM! Life throws united states of america a, "ha, just kidding!" back in our faces. It'due south that time of yr again, folks–a new year ushering in new challenges, celebrations, deductibles, test results, emotions, surgeries, or simply put, the full gambit that comes with a special needs child. But something is different this year. I'thousand starting to "get used to" or become "accustomed to" what a new twelvemonth truly means for my family unit. I'd love to tell you this newfound normalcy helps my anxiety subside, and to some caste it does, but it's never far abroad, luring me back into its cold, unsympathetic clutches.
Getting used to this way of life is something I never imagined I could withstand–holding my son down for IVs and blood draws, pacing in a waiting room for hours on end staring at a board waiting for one single line of digits to modify colors, learning how to employ MyChart better than the hospital'southward It department, and understanding medical terminology and diagnosis descriptions similar the back-of-my-hand. But, that'southward where I'm at and I have to be OK with that in order to be the all-time mama I tin for Rowan.
The most frustrating office of our state of affairs is I felt similar we were over the hump. I mean, Ro's walking (and running!) now and surpassing milestones we never knew if he would be capable of doing–to which we have therapy to thank! Therapy has been a HUGE part of our life for and so long now it'south become second nature, like brushing our teeth. So at that place's the testing. He's been tested for so many things now that I thought we were out of things to check-off the list. I predicted nosotros were in this new stage of life–almanac follow-ups and progression tracking tests. Needless to say, that "prediction" was more inaccurate than that of an 1-800 Psychic. Only I suppose that's the manner life goes–unpredictable. I guess I should know this by now, merely manifestly my optimism hasn't completely abased me. So, allow me to update yous on our most electric current plot twist…
Last calendar month Rowan had an orthopedic follow upward–no biggie. We do this every four-months accompanied by ten-rays. Recently we had noticed, along with his Physical Therapist, that his scoliosis (curvature of the spine) was starting to expect worse. We thought it was largely due to his remainder issues and how he holds himself to walk, but quickly learned that wasn't the case. His latest 10-rays showed an aggressive progression in his scoliosis. His spine has progressed seven degrees in ten brusque months, placing him at the high terminate of the moderate scale and creeping towards severe.
You know, I've come to learn information technology is never a proficient sign when a Specialist skips the Beau or Resident solo consult and just brings them in at the same time as him. That's the moment nosotros know our son is virtually to exist integral in a teaching moment–how to give a family bad news 101. Yet some other thing I've picked up on is reading each of his Doctor'due south habits and quirks to prepare myself for what I'g about to hear.
His Spinal Specialist is world renown and has been doing this a VERY LONG time. He knows his stuff and is very conservative with his care plans. And so, when he walked in and sat downwardly (which he NEVER does) and says, "it'southward time to brace," it's a chip of a gut check and completely knocked the wind out of me. Said caryatid is called a TLSO (thoracolumbosacral orthosis). It's listed every bit "a removable body cast" on the website for the orthotic clinic we were sent to. Rowan is required to habiliment information technology for–y'all ready for this–18-22 hours a solar day! Yeah, y'all read that correctly and yes, that includes while sleeping. As if that wasn't enough news to wrap our brains around in the moment, he continued with: "Your son has a syndrome we know very fiddling about. If he were an adolescent and this was idiopathic (a big give-and-take that means no known cause) scoliosis I could tell you exactly how this would play out, simply he's two and it'southward neuromuscular. Kids under x is a whole different beast and your son'southward started in infancy. I don't want to tell you we are flying by the seat of our pants here, just we kind of are. This caryatid will non correct his curvature but will hopefully stall the progression. And if it doesn't, we move onto a Mehta bandage (a real body cast). And if that doesn't work, we discuss magic rods at that bespeak (major spinal surgery)." FAN-FREAKING-TASTIC…But wait for information technology, it didn't end in that location. They also constitute what is known every bit a butterfly-vertebrae, which is a vertebra about the elevation of the sternum that didn't fuse together and doesn't match up with the other vertebra. Plain by itself information technology's not a huge business organization but, accompanied past a syndrome and scoliosis it's grounds for a full spine MRI to bank check the spinal fluid and cord for problems. Which brings united states of america to our latest adventure.
As most of you lot know, Rowan never stops moving and requires very little sleep resulting in MRIs requiring sedation or anesthesia. We were under the impression they were using general anesthesia after the nurse had chosen two days prior to become over diet restrictions and instructions. Earlier I hung up the phone, I asked what type of anesthesia we would be using–really just with the intent of finding out if they were using Nembutal (an oral sedation) or IV anesthesia. The nurse answered my question with, "We volition put a gas mask on him first to…," which is when I abruptly cut her off. Rowan is a MH reactive patient, meaning those uncomplicated gasses they use in surgery could kill him–and no, that is Not an exaggeration! So plain, information technology's non something Dereck or I take lightly. The nurse continued past informing me his MH reaction wasn't flagged in his chart–which is odd considering he was diagnosed over a year ago–so naturally the conversation started to deteriorate. Though I realize mistakes happen, that is i that could have ended in the unfathomable. Nonetheless, nosotros got past the life-ending oversight and were given the option to use an oral sedation. There are several pros and cons to both types of sedation, but the ultimate deciding factor was the Vascular Access Team (VAT) wanted to strap our piddling man to the bed in club to place the Four. This Mama Comport would accept needed a Psychiatrist afterwards witnessing that, and then we opted for the oral selection–which we would afterwards live to regret. In the hours following his sedation, Ro couldn't walk for the next twelve hours and was extremely irritable–merely hey, at least we will know for next time (insert silverish lining hither). They assured us we would receive results inside 48 hours, only it wasn't until the 75th hr, and three phone calls later, that we finally got the results. As always with reports, it was written in what seemed like a strange language, only after a few hours on Google, I got somewhat of an thought of the findings. Notwithstanding, when I eagerly called his Specialist to become over the report and enquire my v-meg-and-ii questions, I was informed he was in Republic of india until the following week (which for those of you lot reading along is an 11-hour time deviation). Sigh.
The following week we were off to Rowan's caryatid fitting. Unfortunately, Dereck was unable to attend since he had just missed piece of work for an MRI the prior solar day, and then thank goodness for great friends and compassionate nurses. Holding your toddler down to have a plaster mold made is heartbreaking–merely with the nurse's help, and friends who take you lot out for a drink afterwards, information technology was endurable. I am definitely not looking forwards to repeating this process each time he grows, but thankfully in our example, he grows slowly.
We have a 1000000 appointments and tests around the corner and hope we volition have good news in store to share soon–ophthalmology and neuromuscular and gastrointestinal, oh my! Life is a journey, especially with our amazing picayune human. I'd be lying if I said it was like shooting fish in a barrel, but his determination and resilience can and will teach the states all so much near overcoming life'southward obstacles. So, as I embrace this Medical Mama championship I've been given, my promise is he crushes all the obstacles lying in wait for him this year just as he's always done!
Source: https://rowansrippedgenes.com/here-we-go-again/
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