Here We Go Again…

Just when we feel like life is finally starting to slow down, like we can actually catch our breath…. BAM! Life throws us a, “ha, just kidding!” back in our faces. It’s that time of year 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’m starting to “get used to” or become “accustomed to” what a new year truly means for my family. I’d love to tell you this newfound normalcy helps my anxiety subside, and to some degree it does, but it’s never far away, 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 change colors, learning how to use MyChart better than the hospital’s IT department, and understanding medical terminology and diagnosis descriptions like the back-of-my-hand. But, that’s where I’m at and I have to be OK with that in order to be the best mama I can for Rowan.

The most frustrating part of our situation is I felt like 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 so long now it’s become second nature, like brushing our teeth. And then there’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 we were in this new stage of life–annual follow-ups and progression tracking tests. Needless to say, that “prediction” was more inaccurate than that of an 1-800 Psychic. But I suppose that’s the way life goes–unpredictable. I guess I should know this by now, but apparently my optimism hasn’t completely abandoned me. So, allow me to update you on our most current plot twist…

Last month Rowan had an orthopedic follow up–no biggie. We do this every four-months accompanied by x-rays. Recently we had noticed, along with his Physical Therapist, that his scoliosis (curvature of the spine) was starting to look worse. We thought it was largely due to his balance issues and how he holds himself to walk, but quickly learned that wasn’t the case. His latest x-rays showed an aggressive progression in his scoliosis. His spine has progressed seven degrees in ten short months, placing him at the high end of the moderate scale and creeping towards severe.

You know, I’ve come to learn it is never a good sign when a Specialist skips the Fellow or Resident solo consult and just brings them in at the same time as him. That’s the moment we know our son is about to be integral in a teaching moment–how to give a family bad news 101. Yet another thing I’ve picked up on is reading each of his Doctor’s habits and quirks to prepare myself for what I’m 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. So, when he walked in and sat down (which he NEVER does) and says, “it’s time to brace,” it’s a bit of a gut check and completely knocked the wind out of me. Said brace is called a TLSO (thoracolumbosacral orthosis). It’s listed as “a removable body cast” on the website for the orthotic clinic we were sent to. Rowan is required to wear it for–y’all ready for this–18-22 hours a day! Yes, you 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 little about. If he were an adolescent and this was idiopathic (a big word that means no known cause) scoliosis I could tell you exactly how this would play out, but he’s two and it’s neuromuscular. Kids under ten is a whole different beast and your son’s started in infancy. I don’t want to tell you we are flying by the seat of our pants here, but we kind of are. This brace will not correct his curvature but will hopefully stall the progression. And if it doesn’t, we move onto a Mehta cast (a real body cast). And if that doesn’t work, we discuss magic rods at that point (major spinal surgery).” FAN-FREAKING-TASTIC…But wait for it, it didn’t end there. They also found what is known as a butterfly-vertebrae, which is a vertebra near the top of the sternum that didn’t fuse together and doesn’t match up with the other vertebra. Apparently by itself it’s not a huge concern but, accompanied by a syndrome and scoliosis it’s grounds for a total spine MRI to check the spinal fluid and cord for problems. Which brings us to our latest adventure.

As most of you 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 called two days prior to go over diet restrictions and instructions. Before 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 will put a gas mask on him first to…,” which is when I abruptly cut her off. Rowan is a MH reactive patient, meaning those simple gasses they use in surgery could kill him–and no, that is NOT an exaggeration! So obviously, it’s not something Dereck or I take lightly. The nurse continued by 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 one that could have ended in the unfathomable. Nonetheless, we 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 little man to the bed in order to place the IV. This Mama Bear would have needed a Psychiatrist after witnessing that, so we opted for the oral option–which we would later live to regret. In the hours following his sedation, Ro couldn’t walk for the next twelve hours and was extremely irritable–but hey, at least we will know for next time (insert silver lining here). They assured us we would receive results within 48 hours, but it wasn’t until the 75th hour, and three phone calls later, that we finally got the results. As always with reports, it was written in what seemed like a foreign language, but after a few hours on Google, I got somewhat of an idea of the findings. However, when I eagerly called his Specialist to go over the report and ask my five-million-and-two questions, I was informed he was in India until the following week (which for those of you reading along is an 11-hour time difference). Sigh.

The following week we were off to Rowan’s brace fitting. Unfortunately, Dereck was unable to attend since he had just missed work for an MRI the prior day, so thank goodness for great friends and compassionate nurses. Holding your toddler down to have a plaster mold made is heartbreaking–but with the nurse’s help, and friends who take you out for a drink afterwards, it was bearable. I am definitely not looking forward to repeating this process each time he grows, but thankfully in our case, he grows slowly.

We have a million appointments and tests around the corner and hope we will have good news in store to share soon–ophthalmology and neuromuscular and gastrointestinal, oh my! Life is a journey, especially with our amazing little man. I’d be lying if I said it was easy, but his determination and resilience can and will teach us all so much about overcoming life’s obstacles. So, as I embrace this Medical Mama title I’ve been given, my hope is he crushes all the obstacles lying in wait for him this year just as he’s always done!