The bad news (and the good news leading up to the bad news)

 

In a shocking and heartbreaking turn of events, Otis took a spill out of his rented hospital bed yesterday morning, resulting in a fracture to the distal (just above his knee) end of his right femur. It's an awful moment that keeps playing in my head on repeat, and no matter how many times or how hard I wish that we could just go back in time to prevent the fall, the hard truth of it is that it happened and there is no way for us to magically reverse the damage. After an ambulance ride up to a mercifully slow-for-a-Saturday Emergency Department at Children's, we spent the day there as pain medications were administered, x-rays of his right leg and hip were taken, and the orthopedic team was consulted. The x-rays confirmed our suspicion that Otis's right leg had been injured, and the administration of pain medications provided Otis with some much needed relief and rest. The orthopedic team determined that, given the complexity of the newly placed hardware and the two procedures recently performed on that right hip, the best course of action would be to not rush Otis into surgery, but to get him into clinic ASAP with an orthopedic surgeon well-versed in complex kiddos and complex issues. We hope to receive confirmation early tomorrow, Monday, about a clinic appointment with someone on Tuesday, at which time we will discuss the surgical plan for him, as repair of this fracture will require surgery. In the meantime, we are back to keeping Otis fully immobilized in his leg braces and wedge. Otis's own surgeon, Dr. Boyles, is unfortunately out of the country on a mission trip for the week. Another sad piece to all of this is that our next appointment with Dr. Boyles, scheduled for March 7, was to be the one at which Otis would be cleared to stop using the immobilizers altogether, day and night.

In the ED, February 24

The newly reinstated pain and muscle relaxer regimen, combined with the immobilization, is keeping Otis comfortable here at home. He even woke up this morning as his usual smiley self, which is a great comfort to us as we move through all of this. If you know Otis, you know that that smile of his is both balm and sunshine. 

Otis had his six week postop followup with his orthopedic surgeon way back on January 18. At that time, he was healing so quickly and doing so remarkably well overall that we were cleared to begin removing his hip abduction wedge and immobilizers during the day to begin physical therapy, easing in at first with gentle range of motion to his hips and knees, and then beginning to figure out how to work toward gradual weight-bearing. Otis had done so well with pain during those first six weeks that it caught us a bit offguard to see him moan and grimace upon the removal of the immobilizers. He seemed almost relieved when bedtime rolled around and we began to fasten him back into his secure little leg cocoon for the night.

It wasn't long after removing the immobilizers that we graduated from using the long stretcher lift sling and the rented fully reclining wheelchair, to the seated lift sling and his old reliable custom wheelchair where he could sit fully upright at 90 degrees. He started being able to wear regular pants and shoes and AFOs (ankle-foot orthotics, or braces) again when he was up in his chair and out of bed. He began spending more of his daytime waking ours out of bed than in it. We began working with his physical therapist Ellen to get him sitting up on the side of his lowered bed with his feet planted on the ground, supporting him as he worked on waking up all of those long-unused muscles to work back toward standing. Over the weeks, he got to where he was able, with support, to push into full standing and to hold it for nearly thirty seconds in some instances. We got him back on his playmats on the living room floor where he could spend time, supported with pillows, on his belly. He started flipping himself over from belly to back almost right away. Just last Monday during his weekly PT appointment, Ellen and I were able to get him into his gait trainer (walker) using his ceiling lift and gait harness, and he did a full lap from the living room back to his bedroom and all the way back before needing a break. We were looking forward to getting him back in it again at his next PT visit, and for him to eventually get back to using it in the halls at school.  He was making such great strides in his recovery and rehabilitation that along with his teacher Ms. Megan and his school physical therapist Mr. Brandon, we decided that Otis was ready to start going back to school last week. He went back last Tuesday, February 20, for the first time since December 8. He made it for three of the four planned hours before melting down, likely from exhaustion and overstimulation after all the weeks at home in bed, and having to come home to rest, but he made it the rest of the week, even riding his little bus to and from school. 

Field trip to the kitchen, January 5

School via Google Meet, January 9

Ceiling lift, January 19

First full meal by mouth since before surgery, January 25

Cheesin' with a chewy

January 30

February 4

February 6

February 7

February 17

First day back to school, February 20

February 21

Otis's remarkably quick recovery and his bounds in strength and energy leading up to the accident have happened alongside our (Ryan's and my) own growing physical, mental, and emotional exhaustion and fatigue. Full time hands-on, day and night caregiving, even in so-called "normal" times, is intense, and we are just so tired, so worn out, so sleep-deprived. Otis's reassuring smile and resilience throughout all of this (even now, with a newly fractured femur, for the love of Mike) continues to propel us forward, one foot in front of the other, one moment at a time. We know that there isn't a whole lot we are in control of, but what we can do is to just keep getting up and showing up for each other. We are grateful for so much--that Otis's injury wasn't worse or more complex than it is, and that no damage was done to his newly reconstructed hips; for the kindness, compassion, and skill of all of the first responders and the ED nurses and doctor at Children's yesterday; for the wonderful night nurses we do have, who continue to show up for us and give us the gift of sleep three nights per week; for Otis's PT who cares so deeply and who has always been such a good friend to us; for Otis's incredible teachers and school staff and therapists who always show up for him so beautifully and lovingly; for our dear dear friends who have visited and been willing to hang out in the trenches with us and helped us to feel like normal humans; for our dear dear friends who continue to check in on us and send us love even though we are so awful at reaching out; for all of the support and understanding from Ryan's Doherty coworkers, administrators, students and parents; for the endless love and support and help from our families; and for the continued glow and resilience of this magical kid of ours who forgives us our parenting flaws and teaches us that we are also stronger and more resilient than we might think.