Complications

Hey there, friends. We've been back in the hospital with Otis since Monday (it's Friday now) following an unfortunate, and rare, complication from Saturday's femur fracture. Our energy reserves are pretty low at this point, so I've mostly just pasted the update below from an incident report e-mail I sent earlier today to one of Otis's case managers...which is exactly why it sounds more like a "just the facts, ma'am" incident report than it does an update to friends. We hope to be discharged soon (if you've ever spent any time in the hospital, you'll know that the discharge process takes a looooooong time), a little later this afternoon, and are eager to be back at home. As always, we appreciate any prayers, healing vibes, pixie dust, and love you may have to send out for Otis as he takes on this additional burden of healing in his right leg and his lungs. As you know, he's amazing, and way more resilient than any one human should ever have to be.

In the ED Monday night. His vitals and his spirits immediately
improved with the supplemental oxygen.

Resting and healing in the hospital.

A momentary burst of happy energy.

I squish on him, he tolerates me.

The Child Life department shared this really cool Vecta (NOT to be confused with Vecna!) sensory machine with us. It had all kinds of lights, projections, music, bells hoops, whistles, and yo-yos. Otis wasn't nearly as excited about it as Ryan and I were.

Last night of the stay, celebrating the all clear with some non-hospital takout.

------

On Saturday, February 24 at around 9:00a.m., Otis fell out of bed over the low rail of his rented hospital bed. Otis had been in full time immobilizing braces and an abduction wedge following his planned bilateral hip surgery (VDRO/femoral varus derotational osteotomy) and right-sided pelvic osteotomy on December 11, 2023, and had recently been cleared to start removing the immobilizers during the daytime to begin rehab and PT. He had been hesitant to move his legs much on his own, and in one sudden and surprising movement, he kicked his left leg over and rolled out of the lower portion of the bed. During "normal" times, Otis is in a regular, queen-sized bed enclosed with high toddler rails. Due to the increased physical demands in caregiving following his return home from hip surgery, we have been using a rented home hospital bed due to its hi-lo function. Unfortunately, the guard rails on this rented bed, which has no guards at the head or foot of the bed, proved to be inadequate unless Otis is fully immobilized in his braces. Prior to this incident we had already begun to work with Otis's Rehabilitation doctor and durable medical equipment company on the beginning steps toward securing a permanent high-railed special needs safety bed for him, a process we know will take months to complete.

Otis was transported by ambulance to the ED at Children's Hospital in Colorado Springs, where he was evaluated and x-rayed. It was determined that he had suffered a nondisplaced fracture to the distal end of his right femur. Given the complexity of the recent surgery and new hardware in his hips, the orthopedic team was hesitant to rush him into surgery. Instead, they made a plan for us to continue to keep Otis immobilized at home in his post-surgical equipment, and to follow up in the orthopedic clinic the following week to discuss a plan that may or may not include surgery to repair the fracture. We were eventually scheduled to follow up in the orthopedic clinic on Wednesday, February 28. In the meantime, we would keep Otis immobilized and continue to manage pain and muscle spasms with medications at home.


Beginning Saturday night, Otis's night nurse noted that Otis's oxygen saturation was lower than normal for him while he slept, and that his respirations were more rapid and shallow than usual. He improved to normal range during waking hours on Sunday, but we noticed another drop in his oxygen levels (monitored with a finger pulse oximeter), that his heart rate was higher than normal, and that his respirations were once again becoming more shallow and rapid. First thingMonday morning we followed up with his home health nurse case manager and the orthopedic clinic first, as we assumed that the recent addition of oxycodone for pain was the culprit. Everyone agreed that we should hold the oxycodone and see if it made a difference in the oxygen saturation and other vitals. When these things did not improve over the course of the day, we called triage at the Children's Special Care Clinic and were told to go back to the ED, as Otis could be experiencing an embolism.


We arrived at the Children's ED at about 4:00p.m. on Monday, February 26 and stayed there throughout the night. In the ED, Otis was immediately placed on oxygen, bloodwork was taken to test for blood clots, and an EKG and chest CT were done. It was finally determined that Otis had a "fat embolism" from marrow globules migrating from the femur fracture site up into his lungs. Otis was admitted to the hospital at about 6:00a.m. Tuesday morning. While in the hospital, Otis has remained on 1 liter of oxygen, and the following tests have been performed to rule out blood clots and additional fractures:

• Echocardiogram
• Ultrasound of both legs
• Chest x-ray
• Brain MRI
• x-rays of both lower legs
• x-rays of right foot and ankle

Aside from the chest x-ray showing the emboli in his lungs, and the echocardiogram showing an anotomically and physiologically, although stressed, heart, all of these tests thankfully came back normal--no blood clots and no additional fractures. We have been assured that the fracture is considererd a "greenstick" fracture, and is thus not a bad one as far as femur fractures can go. Because of this, Otis should be able to continue to heal without any surgical intervention. We will just keep him in his existing immobilizer on that right side for a few weeks longer than originally intended. While inpatient, Otis has remained on 1 Liter of oxygen continuously, and he began to receive twice daily injections of a blood thinner in order to prevent blood clots from forming for the duration of his immobilization. We will continue to administer both once we return home. Otis will be followed by Cardiology and Pulmonology for management and eventual weaning of his oxygen. He will see his orthopedic surgeon in clinic for followup to make sure everything is still healing as it should.

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. 

Holidaze (i.e. it's taken me nearly a week to write this post)

Three and a half weeks out from surgery and Otis is continuing to do pretty great. We've been able to back off on some of his remaining pain medications (just Tylenol and Ibuprofen at this point, still no need for Oxy, thankfully!), and are continuing with Valium to help keep bigger seizures at bay as he continues to heal. We take him back to the orthopedic clinic for his next followup on January 18, at which time we'll learn more about gradually easing off a bit on his immobilization restrictions. It will still be a very long rehab and recovery journey from there. We have learned over the course of the greater adventure of this life with Otis that we all tend to do best when we can just remember to pause, breathe, and stay in the moment as much as possible, facing just the things in front of us, one day at a time. 

Our sleep schedule is still wacky as we continue to tend to round the clock repositioning and medication administration needs, as well as Otis's normal on and off nightly wakefulness and seizure activity that we're used to. We are still trying hard to keep day and night differentiated for Otis, but have weathered a few days where Otis seems to have day and night completely flipped. Ryan and I alternate "night shifts" with Otis, switching off in the morning to give the parent-on-duty a few hours of sleep once morning comes. We are very very tired, but so relieved that Otis has done so remarkably well with this recovery. Just that in itself gives us the boost we need to keep pushing through. Well...that, and coffee. And naps where we can catch them.

We are so grateful for the people in our lives who continue to reach out and keep us connected through all of this. The outpouring of love we have received from the people in our lives has been almost overwhelming. We are so lucky. Even without a big event like a major surgery to work through, the experience of raising and caregiving a medically complex child can be a lonely and isolating one in general, and we have a tendency to withdraw and go inward, existing for long periods in survival mode. The calls, the text messages and e-mails, the notes of encouragement--even when we're not able to pick up or respond right away--really are so uplifting to us, always. 

Enshrined by cards made by O's school friends and Ryan's DHS students ✨

The brightest

Blocking Doherty's spring musical while Otis sleeps.

Christmas morning sleepyhead

A Christmas gift from Ryan's sweet school community

Someone...

is...

SO....

over it!

HATX 💜

Christmas Eve living room jam

(re)Reading the wonderful encouragement cards from O's
classmates and school community

The Marathon Continues

We've slowed down on posting, but all is well and we are hanging in! We have been home from the hospital for a week as of yesterday evening and Otis is just a little over a week and a half post-op. We loaded him into the van Thursday morning to take him to the outpatient clinic for his first post-op orthopedic visit where we gained some experience--thankfully with much assistance from nurses and radiology techs--transferring Otis without the use of Hoyer or ceiling lift, first on and off of the x-ray table and then on and off of the exam bed. I don't think I've mentioned this yet, but Otis is now over five feet tall and weighs just a little over one hundred pounds, so the lift is definitely our preference these days, especially now that Otis is not able to assist by standing and bearing his own weight as he usually does. 

The ortho visit went really well. The outer gauze was removed, leaving just the steri-strips and dissolvable sutures underneath, and the incisions have healed nicely. X-rays showed that the hardware is still where it should be, and the PA showed us many of the images that were taken throughout the 5-hour procedure  (skip to 1:50 for a great illustration of the procedure) to give us a better understanding of the process, including how the bone grafts were taken and used to reshape the heads of both femurs, as well as the socket (acetabulum) of his right hip. While pre-surgery both hips (especially the right) were at high risk for dislocating, they are now fitting snugly into their sockets as they should be. We will take Otis back to the clinic for his next follow-up in four weeks, at which time we'll learn when and how we can begin to ease up on some of the restrictions on his mobility. While it will be a relief to give him breaks from the immobilizers and allow him to begin to explore some movement without them, we also have some anxiety about how his seizure activity without the immobilizers might cause added pain and inflammation as his bones and muscles and connective tissue continue to heal. We are very lucky to have such an incredible orthopedic team working with Otis and guiding us through all of this--his surgeon and all of the PAs and nurses on the team have just been so wonderful to work with. We are grateful for not only their skill, but for their unending kindness and patience as well. 

Before surgery, October 2023

Post-op, 12/21/23

Otis has lost the pep he was showing in those first few days after surgery, but is still doing incredibly well--so much better than we had anticipated. We are doing our best to keep him and the mood in his room as active and lively as possible during during the day to help differentiate between day and night, but it's been a challenge fending off sleepiness and boredom--especially for a kid who is bedbound and receiving regular doses of Valium. The Valium has been doing its job to keep muscle spasms and bigger seizures at bay and although we have seen an increase in the intensity of his tonic seizures over the past few days, we have thankfully yet to see any of his big convulsive (tonic-clonic) seizures so far. Pain still continues to be pretty well controlled, as we continue to alternate Tylenol, Ibuprofen, and Valium and reposition him from one side to his back to the other side every two hours. This round-the-clock medication and repositioning schedule sort of feels like (what we can remember of it, anyway) being back in the fog of those early days and weeks of having a newborn at home. 

Catching another al fresco lunch
while the warmer weather holds.

The current setup, with all the things...

Ryan submitting grades while Otis sleeps.
(A teacher's work is truly never done...even when on "break.")

Freaking amazing, this kid. 

We are also incredibly grateful for our wonderful community of friends, family, coworkers and O's school and homecare staff who continue to lift us up and hold us with so much love and kindness throughout all of this. We are thankful for the meals and the treats and the visits and the offers of help (which we are learning to be better at accepting!) and each and every prayer and note of encouragement we receive. It is this love and connection that continues to keep us afloat as we make our way through this. 

Merry Christmas, everyone! xoxo

Home (Or: Post-op, Day...Wait, what day is this?)

After an entire day of hurry-up-and-wait, Otis was finally discharged from the hospital at around 5:00 p.m. on Friday. We fought the holiday time Friday evening traffic to get across town to a pharmacy that carried the medications Otis would need to keep his pain, muscle spasms, and seizures under control in these still-early days of his healing, and then arrived at home, where we unpacked and began the tedious process of figuring out our new schedule and routines. Since Otis is limited to thirty degrees of flexion, he is unable to sit up to eat and drink in a safe position, so he will get all of his water and nutrition via his g-tube until he is cleared to sit up again at ninety degrees. Another reason we have decided to do this is because the Valium that has been added for muscle spasm and additional seizure control is sedating enough to affect his ability to swallow and safely clear anything taken by mouth, so it's just precautionary. We can't risk him aspirating and getting pneumonia on top of everything else we're putting him through right now!

We are now on our third full day at home, and Otis is continuing to do WAY better than we had expected. Aside from being somewhat mellowed out from the Diazepam (Valium), Otis is pretty much his happy, smiley self. He is on a pretty tight medication schedule, getting either Tylenol, Ibuprofen, or Diazepam every two hours around the clock, along with having to be shifted and propped up from one side to his back to his other side every two hours to prevent pressure sores. We're using throw pillows for the propping right now, but are hoping to receive some wedges like the ones they used in the hospital. Seizures have so far been well controlled--just mild ones so far, and none of the bigger ones that would cause all of his muscles to seize into forceful flexion. His surgeon is confident that the hardware in his hips can withstand such a forceful event, so the concern would be pain and potential fractures further down his legs as they force against the immobilizers. I don't think Ryan and I will stop holding our breath about that until he is cleared to remove the immobilizers and start moving freely, now five to seven weeks from now. 

In the meantime, we are still just trying to find our way into routines that accommodate the necessary 24/7 hands-on caregiving while also taking turns to rest and get some sleep. It's been tricky so far, as we currently have private duty nursing from our home health agency three nights per week, although we just received news that there is a nurse that is looking to pick up another shift...fingers crossed! On the nights we don't have a nurse, Ryan and I take turns being "on duty" in O's room, administering his meds every two hours, and waking up the other to assist with rotating and hygiene/changes. I joked with our Saturday night nurse that he's probably going to see us age quite a bit over the next several weeks! We'll get through it, though. It's pretty intense, but Otis continues to remind us that if he can do this (with a smile, no less), then so can we. 

In the hospital lobby waitng for Dad to bring the van around.

We had to remove the passenger seat, but we were able to get this long tall kid in his reclining wheelchair into the van!

Homeward bound!

Oh yeah...this happened outside of O's hospital room window on discharge day. Otis slept through it, but Ryan and I enjoyed the festivities!

O's temporary setup in his rented hospital bed at home.

Abduction wedge + individual knee immobilizers to (hopefully) keep him from
flexing too much when he seizes.

Trying out the ceiling lift to transfer him into
his rented reclining wheelchair on Saturday.

Vitamin D + g-tube lunch

Worn out from his first trip outside

We had to create a schedule to print out, since 
there's no way our brains could keep all of this straight!

Oof.