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On the Other Side of PERCS: The Best is Yet to Come! (Part 4)

Learning to Walk All Over Again: Part 4

When I awoke from surgery in the recovery room, I found myself still intubated with a breathing tube down my throat. This was alarming to feel at first, until I remembered that my anesthesiologist had mentioned that sometimes this happens, if there are concerns about lung function while coming out of anesthesia. I'm grateful she had given me a heads up beforehand as it made a tense situation a little less worrisome. Soon, the breathing tube was out and the next thing I recall, was being in another recovery room.

By now, I was freeeeeeezing cold and itchy from head to toe, but thankfully my nurse was on it in a flash and I soon had a gigantic inflated heating blanket blowing hot air on me, and some benedryl on hand to get that crazy itching under control.

For the next several hours, my memories are hazy. It took a bizarrely long time to get moved up to my room (a solid 5 hours, I'm told!), and my Aunt and Nonna were allowed to come back to see me for brief visits every hour, which I was happy for.

Something about the cocktail of medications I had, made it next to impossible to keep my eyes open or to form coherent words....but eventually...finally... I at least knew that I was on my way up to my room.

Once there, I was a bit caught off guard. This room was TINY, and a shared one at that. My bed barely fit in the space and there was room for only my table and nothing else! I had a lovely roommate close by too, just separated by a curtain...and so judging by our "spacious" accommodations, it was clear that I'd be going solo for the night while my Aunt and Nonna slept back at the hotel. This was a big change from my SDR stay where I had a private room, and the option to have my Aunt Dianna stay with me overnight if she wished. Those first 2 SDR nights, I was so glad she did, as I was way too out of it to be able to advocate for myself.

This night would be different though, and after I met my night nurse, resident and pain nurse, that was it. Nonna and my Aunt were asked to leave, and it was just my fuzzy-minded self and my roomie for the night. It didn't take long for me to feel a deep, hot, sharp pulsing pain in my legs and to be uncomfortable from the tight knee immobilizers that covered me from hips to just above my ankle. If I had plans of sleeping at all, it'd be exactly as I was positioned, because my lower body wasn't about to budge no matter how hard I tried to lift my legs!

I tried to sleep, but as most know who've done the shared hospital room stay, it was next to impossible. Every 30 minutes it was either myself or my roommate who were being checked on. So eventually we both gave up, and started chatting with each other, separated by a paper thin curtain.

As it would turn out, I was so grateful she was there. She was a lovely soul who was a hospice nurse from Illinois, who had just had a shoulder replacement. Upon hearing this I knew I ought to keep my complaints to a minimum since getting some muscles and tendons lengthened in my legs must surely have been less painful than a full shoulder replacement! We chatted all throughout the night, and it really helped pass the time and ease my nerves. And when we would each need to be turned or repositioned - which was painful for us both! - we cheered each other through those rough patches as best we could.

One time in particular when my nurses needed to change my bedding (with me still in it!) I was forcefully rolled back and forth several times over and over during the course of 5 minutes. The non-stop movement caused pain that was off-the-charts awful. I tried to not make too much of a fuss, but there were some moments there that really tested my resolve. Throughout that time, this sweet lady said a prayer for me, and then tossed her graham crackers my way afterward as a treat for getting through it. She was just the most precious soul.

As the night wore on and our chats continued, I learned that she and her husband had their honeymoon in Parry Sound 20 years ago. Once again, I couldn't help but smile....because Parry Sound is just a hop, skip and a jump from where I grew up as a kid. She knew the Muskokas well, and it felt like the touch of home I missed and needed dearly on this night. Once again, I was reminded that nothing was random about this part of my journey, either.

It took forever for morning to come, and I tried to savour the lone apple my Aunt had left for me (dinner never arrived that night and breakfast would take a while to come it was nearly 36 hours before I had had anything other than water and medication to feast on!). But eventually the day got rolling. I thanked the night nurses, particularly a lovely lady named Abim who was wonderful amidst many a call for help with a bedpan --since I couldn't take the immobilizers off, or move my legs well at all-- and who managed my pain wonderfully under the circumstances!

I then soon said hello to the day staff. Things moved quickly from there and before long, a physical therapist was on the scene to get me up and moving at 9am!

I was once again caught off guard by her arrival, since my surgery had happened just 16 hours prior, and they are supposed to wait til at least hour 22 before getting adult hamstring PERCS patients up on their feet! However, this lady was on a mission, so it was time for me to get up, whether I was ready or not!

Further complicating matters, my PT had never heard of PERCS or SDR, and assumed that I would just get up and walk unassisted, no problemo! I quickly advised her that at the very least, I'd need my walker and a gait belt for safety before we went any further! After teaching her how to use the gait belt (!!?), and explaining that I was to get up under my own power and not be pulled upward (thank goodness for our SDR Adult facebook group where we've learned from each others experiences at Barnes!), we took the knee immobilizers off for the first time, and I gingerly swung my legs over the bed. This was also the first time I realized that I had had a more invasive PERCS than originally planned! Typically, only the medial hamstrings are lengthened with PERCS.

I, on the other hand, found bandages on both the medial and lateral hamstrings --on both legs--which meant that this was about to be a whole lot harder, and more painful than first anticipated.

After a few deep breaths, I mustered my courage to stand up (draping my upper body over the walker to try and take some weight off my legs in preparation for the pain to come). Standing up that first time was no joke. I honestly think it was doubly more painful than the dreaded "Day 3" post-SDR, where they get us up and out of bed for the first time. I was in awe of just how much pain I felt, and knew pretty quickly that this was going to be a long haul to recovery.

Once up and the dizziness had subsided a bit, I was able to walk out of the room and down the corridor which felt like huge win! Immediately, I knew my stride length had improved as my legs would fly WAY far forward given the new range of motion in my hamstrings! I was using the same power I always had when walking, except now without the resistance of those old cranky hamstrings, my legs felt so much more fluid and light. It was comical how gigantic my strides were, but I had no ability yet to control them! My knees hurt a lot, and felt completely foreign to me but in positive ways which was also encouraging.

Soon, I was back to bed, having breakfast (hallelujah!) and then we were just waiting around to be discharged. I said a tearful farewell to my roommate, wishing her well with recovery and before long, we were on our way out. I was thankful to have made it through to the other side of PERCS, and happy to be heading "home" to the hotel for some proper rest.

Over the weekend, we rested, binge-watched cheesy feel-good Hallmark movies, and had some amazing dinners (Sugar Smoke House for the win, with ribs that were out of this world!! Thank you Aunt Mary for braving some awful weather and the busy downtown St. Louis core at night to bring back our feast!). I was so thankful for this restful time with my dear Aunt and Nonna. Although the nights were tough (ice-pack-filled knee immobilizers are evil, just saying!) and getting up and down to use the bathroom continued to be horribly painful, but with each passing hour I started to find my routine.

By the time Sunday rolled around (just a day and a half post-op!) my legs were only too happy to display why they hurt so much....and for as much as I'd like to say the degree of bruising surprised didn't, because it matched the pain I felt to a tee! (Don't look if you're sqeemish!)

The following Monday and Tuesday, I had out-patient physical therapy back at the Children's hospital where I was reunited with John again! The sessions were great. We took things super slow, because I was still SUPER, SUPER sore...but I learned a home stretching program, we tackled the leg press, stairs, the treadmill and more dreaded sit-to-stands. I also left with a program to give to my therapists back home.

At the end of each session I was wiped right out, but this gave me confidence to know that although it would be incredibly hard, I'd have the ability to get up into my Aunt's big SUV for the long drive home on Wednesday, which was really important if I had hopes of coming home with my Aunt! lol.

What helped to boost my spirits too, was to run into my Canadian SDR friends Alison and Mike, after one of my afternoon therapy sessions! They're from the GTA, and I was fortunate to meet them shortly after launching my fundraising, back in October 2017. They have been such a wonderful source of support, encouragement and friendship on this long road to making SDR happen. They've also worked tirelessly for 2 years to give their own beautiful son James the gift of SDR, too. At long last, his time had come to be in St. Louis, and I couldn't have been more delighted for them to have finally reached this point. My heart was so happy that sweet James would soon be spasticity-free, too. We were able to briefly meet up over lunch and snap a quick picture before parting ways and wishing each other well in the days to come. It was another highlight moment, for sure.


How do I possibly start to wrap up the story of this wild Phase Two Journey?

Well, in many ways it bears saying that I'm starting from scratch all over again. (Remember me being SO excited to hit a 1.6 mph speed on the treadmill not that long ago? Well, I'm now back to a snail's pace of 0.3 mph, and man, it's still too fast at the moment! Sigh!) Being right back at the beginning and learning to walk all over again for the 3rd time in my life is hard to reconcile, but I know it's just part of my path to progress --and I remain grateful that I've even had the opportunity to get this care... to get this far!

I am blessed and will continue to be forever thankful.

So far, my cantankerous old left knee has been a happy camper --I haven't felt that old debilitating pain once yet when weight bearing...and am hopeful my rehab will continue to trend in that direction. I'm cautiously optimistic, and will manage my expectations over these next few weeks, just in case.

But for now, PERCS was a success, Dr. Dobbs truly did his best as he said he would...and so far, I'm better off for it! Amazing.

For one last St. Louis therapy HURRAY, I decided to see if I could tackle climbing the stairs going out of the Children's Hospital on our last day. This was my own personal "Rocky" moment! hahaha

Ironically...or perhaps just good friend John was there to cheer me on one more time.

Although those steps were incredibly, and painfully hard to climb (right now, I can only push up by side-stepping because stepping straight up elicits pain that no one wants to experience!), I conquered them and that was so, so huge for me. My knees may be cranky, but they handled it, and I was able to prove to myself that one more time, my mobility is absolutely worth cherishing and fighting for.

For those who are reading along, I'm sure it might get annoying for you to learn that I've teared up yet again in summing this up for you...but in looking back at this past week in St. reflecting on the true fears I felt (and then conquered)...and when realizing that our educated, risky, yet necessary gamble paid off...I can't help but have happy tears of relief and gratitude.

Phase Two is underway, I made it through... I'm still walking, my knee is cooperating thus far...and ultimately, it's been MISSION ACCOMPLISHED. I really, truly didn't think it could possibly get better than that....

But then of course... St. Louis still had one last surreal surprise in store for me.

In this SDR journey, I've been so incredibly fortunate to meet other adults with CP from around the world who have since become dear friends. We share a bond that is impossible to explain unless you've lived this frustrating spasticity-driven path for many years into adulthood. Unless you've reached that point where you were all but certain that hope was lost... only to somehow find it again, through the magic of social media.

One such SDR lady who I love like a sister - who've I've now known for years, talked to for hours via video chat...yet never actually met in person - is my dear friend, Sharon. She's from New York, and came to learn of SDR through my other dear friend Liz (who I've also written about before). Sharon and I share such a special connection and although it might seem weird to say given that our friendship thus far had only been online....I mean it when I say that I love her with my whole heart.

So when our paths finally crossed in St. Louis on my last day there, it was the best way imaginable to mark the end of this trip. Getting the opportunity to hug Sharon in person was a moment I'll never forget, and one I'll forever cherish. She is as kind of a soul as you'll ever meet, and it was a pure joy to meet her and her father, and to share lunch together. I was also so happy that I could share this special part of my world, with my Aunt Mary. I wish dearly that we had all had more time together, but I know that I'll get to hug her again soon, and make new memories together (that don't involve the darn hospital! lol.)

I continue to experience so many special moments on this wild and wonderful journey, and it's hard to imagine what else might be in store as my path to progress with these crazy new legs continues. All that I know is that I'm blessed beyond measure, thankful in ways I can't describe, relieved to still have my conviction to keep moving forward no matter the obstacles put before me...and oh so happy that 3 years ago, I began what can only be described as a giant leap of faith into the unknown.

It's crazy what can happen when we have courage to chase our dreams, especially when they seem impossible, because as I have learned time and time again -- that is where the magic happens.

I won't dare imagine what might come next in the months ahead.

But as they say in the SDR world...I surely hope that even still, "The best is still yet to come!"... because even though this has been the hardest thing I'll likely ever do, it has also been so, so much fun!


Go back to read Part 1

Go back to read Part 2

Go back to read Part 3

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