Post-op, Day 3

Otis had a pretty sleepless night last night, thrashing his arms around as he fought to be able to turn onto his side into his normal comfy sleep position. Although we kept up with his scheduled and PRN pain medications overnight just in case, the agitation seemed less from pain and more from discomfort and frustration out of not being able to move the way he wanted. He finally drifted off to sleep for a good solid nap at about 7:00am, and has passed a really peaceful day ever since--a total 180 from the pain and agitation of yesterday. 

Later on this morning we were able to give him a bed bath which left him clean, happy and feeling good. He enjoyed another long nap while the physical therapist came in to train us on how to safely tranfer Otis to and from his bed to his temporary reclining wheelchair (which was delivered to O's hospital room this morning!) using both a Hoyer lift and just an unassisted two-person lift. The PT provided a special sling to use with the lift that will allow us to keep Otis lying flat throughout the lift, rather than lifting him into a full seated position which most lift slings are designed to do. Otis slept through the entire Hoyer lift training and kept napping in the wheelchair while we ate lunch, until our clunky two-person lift finally woke him up. We decided we'll just stick to using the Hoyer!

It was a kind of low-key lazy afternoon of Otis watching movies (Nemo and Dory) on his tablet. We've got just a couple of items to check off the list before we're able to go home tomorrow, including a baseline x-ray of Otis's newly remodeled pelvis. It's been nice feeling so supported around the clock with all of the extra skilled hands here at the hospital, but we are ready--if still a little nervous--to be back in our home, getting settled into our new routine. 

Post-op, Day 2

Otis had a fairly restful Monday night in the ICU following surgery. When he first arrived in his ICU room out of recovery that afternoon, he put up quite a fight trying to sit up. He thankfully began to relax after the administration of his first dose of post-surgery Valium, which he will be getting regularly to serve the dual purpose of preventing painful muscle spasms and keeping some of his bigger seizure activity at bay (fingers crossed). We think that initial fight may have had to do with the anesthesia wearing off. I'm sure this whole experience must be quite bewildering to him. 

He woke up Tuesday morning (post-op, day 1) with some reassuring smiles, and opened his eyes and looked around for really the first time since surgery. The pain and discomfort of being immobilized found him shortly after that, so the rest of the day was mostly spent keeping up with his meds (Tylenol, Toradol--an NSAID like ibuprofen for inflammation, Valium, and low dose Oxycodone) and trying to keep him comfortable. His epidural was kept on all through the day yesterday for continued pain control, and the Foley catheter that was used during surgery was kept in to prevent urinary retention that can happen with an epidural. This also kept us from having to do any diaper changes right away. The nutrition team got him going with g-tube feeds mid-day yesterday, while IV fluids were gradually discontinued. Otis was moved from the ICU to the regular pediatric floor mid-day, he was able to ditch the oxygen cannula as his O2 sats remained steadily high without it, and he was finally able to settle in and relax by late afternoon and was able to get another mostly restful night of sleep. 

This morning, post-op day 2, began with the anesthesia team turning off his epidural to see how he would do on oral (g-tube) and IV pain medications only. It wasn't long before the pain found him again, and his orthopedic surgeon quickly bumped up his Oxycodone dose, which had previously been at half strength while the epidural was active. We were assured that while really rough for Otis to endure--and for us to watch him endure--and that this part of the process is to be expected. If we find that the current regimen is just not enough at this point to keep his pain under a reasonable amount of control, the next step will be to add a transdermal clonidine patch for pain. The goal is to work our way toward a plan that we will be able to continue at home, as we will not have access to IV medication options. The increase in his Oxy today seems to have brought a little bit of, if not total, relief, and he has had some decent periods of rest. 

Our next big goal is to get his bowels moving! The combination of narcotics and immobilization is counter to bowel motility, so we're doing everything we can--continuous g-tube feeds that contain plenty of fluids, Miralax, suppositories, belly massage--to try to get him going. Getting his bowels moving will also help to keep his seizure threshold up. We've thankfully managed to avoid any big seizures so far (likely due to the Valium) and are still sort of half holding our breath in anticipation of how that first inevitable tonic or tonic-clonic seizure might impact his newly reconstructed hips. Our hope is that the immobilizers--a big abduction wedge pillow combined with full leg-length immobilizers to keep his knees from flexing--will hold strong while also not causing any injury to him if his body isn't able to move the way it wants to during a strong seizure. But for now, seizures seem to be well controlled. 

Ryan went home for a bit today to receive our temporary equipment from the home medical supply company, and we are now equipped with a hospital bed and Hoyer lift with the appropriate spreader bars and long sling that will allow Otis to remain supine in his immobilizers while being lifted. Thanks to his newly widened bedroom doorway, everything was able to fit in his bedroom once Otis's regular bed was dismantled. We will likely move a recliner in next to the hospital bed so there will be a place to sleep near him on the four nights a week we are currently without a private duty nurse. We are keeping our fingers crossed that our home health agency will be able to staff those open shifts very soon, as Otis will require cares, including medication administration and repositioning, frequently around the clock. 

Tomorrow morning, after allowing a dose of his pain medications to kick in, Ryan and I will be shown how to transfer Otis, both as a two person lift, and using the Hoyer. We are hoping we can learn to do this without too much disruption, but it is something we've got to master before we can take this show on the road. Another thing we'll need to master is the art of the immobilized diaper change--oof!

The final piece of temporary equipment to arrive will be a reclining wheelchair that will support Otis fully, or nearly fully, supine, as his current custom wheelchair only allows him to sit at ninety degrees. His restrictions for the next six weeks are actually thirty degrees--we can either have his legs tilted up at thirty degrees or his upper body propped up at thirty degrees--while he heals. This wheelchair will be delivered to the hospital either tomorrow or Friday so that we can transport him home in our wheelchair accessible minivan, Harold. 

We are so fortunate to have so many wonderful people in our lives, holding us throughout all of this through your thoughts and prayers and kindnesses. We are just so grateful for all of you, and we feel so loved and supported and uplifted. This is a really challenging time for us, but we still feel so lucky for all of the goodness and abundance in our lives. Our family, our friends, Otis's school community and homecare staff, his incredible orthopedic surgeon and orthopedic team, and all of the incredible nurses who continue to help us while we're inpatient. I mean, come on...nurses are truly the biggest superheroes of all. 

Otis with his beautiful new quilt made by his Grandma Donna, and his new weighted stuffie from our old friend Nurse Steven--his previous home health private duty nurse who now works here at Children's!

Yesterday was my birthday, and by hanging this banner in O's hospital rooms, Ryan made sure I didn't forget it! David and Donna brought some yummy cake, and we were able to take a little time to celebrate in the afternoon. 

Surgery Day

Pre-op

Recovering in the ICU

I've been sitting here for ages trying to figure out how to sum up the day, and I finally realized that I just don't have the brain power right now. But because I know it wouldn't be cool to just not share any update at all, I'll post this Reader's Digest version for now.

We checked Otis in for surgery at 5:30 this morning, and at 7:30 one of the OR nurses wheeled him back and away from us for surgery. At 9:00 we received a text update notifying us that surgery was finally underway, and we continued to receive periodic text updates--always in all caps, like they were YELLING THE UPDATES AT US--for the next five hours just letting us know how he was doing and giving us an idea of where they were in the process (done with right hip, moving onto left, etc). Then finally, just before 2:00pm, Otis's surgeon, Dr. Boyles, came out into the surgical waiting room to announce that the surgery was complete, that it was a success, and that Otis was in recovery and we would be able to meet him up in the ICU where he would continue his recovery for the next day or so. Dr. Boyles said that from his perspective, everything went beautifully with the surgery. He performed the VDRO on both hips, the pelvic osteotomy on the right hip, and was able to avoid having to do a pelvic osteotomy on his left hip. 

So this is where we are for the night, here with Otis in his room in the ICU. He is being given Valium to both help reduce muscle spasms and to keep seizures at bay as he begins to heal. It's also helped to keep him relaxed, as he keeps fighting to pull himself up into sitting position in his hospital bed, despite being immobilized in an abduction pillow and knee immobilizers. Prior to surgery, he was given an epidural that will stay in to continue to help with pain over the next couple of days as the anesthesia medications continue to wear off. If all goes well tonight, Otis will be transferred out of the ICU to the regular pediatric floor for the next 3-4 days until we're cleared to take him home. 

There is so much more to share, but I'll have to save it for next time. In the meantime, thank you all so much for all of your prayers and love and encouragement through all of this. It really means so much more than we can express. 

VDRO Surgery

 

Hello, old friends! Remember this kid? Otis is 12 years old now, a 7th grader. He continues to stretch and grow like a weed, and is now over 5 feet tall and weighs in at over 100 pounds. With some recent changes to his medications, he has enjoyed improved seizure control over the past few months--still with daily seizures, but their duration and intensity have greatly decreased, as has recovery time. He's still not a great sleeper, but we are fortunate enough to have night nursing help three nights per week which gives us a little bit of much-needed nighttime respite. We're hopeful that our home health agency will be able to staff more nights for us again soon! 

We are posting now to let everyone know that on Monday, December 11 (tomorrow), Otis will be admitted to Children's Hospital here in Colorado Springs for major reconstructive hip surgery to correct his bilateral hip dysplasia. In addition to intractable epilepsy (Lennox-Gastaut Syndrome), Otis also has hypotonic cerebral palsy. Because of his low muscle tone and inability to run around and bear weight on his own like a "typically" developing kiddo, Otis has developed progressive hip dysplasia, meaning that his hips have gradually been working their way out of socket, and if we don't take preventive measures now, he is at great risk for one or both hips to completely dislocate. This would be completely devastating, as there is nothing that can be done to repair a hip once this has happened. Otis would not only lose all hip function, but would spend the rest of his life with pain and severe arthritis as a result. His hips have been monitored closely by his orthopedic surgeons and rehab doctors over the past several years, and his annual x-ray this October revealed that his dysplasia has finally progressed to the point where we must intervene as soon as possible.    

Although the underlying cause is a little bit different than what is shown here (no muscle spasticity for Otis), this video shows exactly the procedure that Otis will undergo:  

bilateral (both hips) VDRO (varus derotational osteotomy) with pelvic osteotomy to reshape the shallowing of his right hip socket, and possibly his left socket as well. The procedure will last approximately 5 hours if all goes well, followed by a 4-5 day hospital stay. Once he is discharged, Otis will come home to recover. He'll be immobilized in an abductor pillow and knee immobilizers for 6-8 weeks while his hips heal. Once he is cleared to begin bearing gradual weight again, his orthopedic surgeon estimates it will be about a year of PT/rehab before he (hopefully) reaches full recovery. 

In the meantime, we would happily take any prayers, good vibes, pixie dust, love, and healing thoughts that you all could send Otis’s way--specifically, that the surgery is successful, that we can avoid any complications, that the journey isn’t too painful for him, and especially that the bonds between his bones and the new hardware are strong enough to withstand his daily seizures. We are so fortunate to have access to the best quality medical care for Otis, and are so blessed and grateful to have each of you in his and our lives. 

We will be back to post updates here on Ye Olde Blogge. 

Is this thing working?

Ryan and I are terrible at social media and even worse at blogging, so it's been an age since we've shared any updates on Otis. We know we have a ton of catching up to do, but for now we just want to briefly share the latest.

This Wednesday, Otis will be going up to Children's in Highlands Ranch for an outpatient procedure to swap out his old, dying VNS (vagus nerve stimulator--sort of like a pace maker that quells abnormal brain activity that leads to seizures) for a new one. The existing VNS battery, which was originally placed at Children's Mercy in Kansas City in March of 2013 when Otis was just 21 months old, started fizzling out back in February--nearly a year past its projected end-of-life. Because we had never noticed the VNS doing much of anything to help reduce Otis's seizures, our plan has always just been to let the old battery die. Over the past few months, however, we've realized that it may have been helping quite a bit more behind the scenes than we realized, so we decided to go ahead with the procedure to upgrade to the newer model of VNS.

Please think of Otis Wednesday morning and send him whatever healthy, happy, healing vibes you've got to spare. The procedure is outpatient, but it still requires that he be placed under general anesthesia, which is always a little nerve-wracking for anxious parents! We're hoping that the new VNS will help pull him out of the seizure rut he's been in for the past couple of months so that he can get back to his happy, energetic, smiling self in time to enjoy his summer. 

21-month-old O Recovering from VNS surgery, March 2013

Mother's Day 2019 at Mueller State Park

Misadventure

It's kind of hard to know where to begin, so we'll just start here...

A couple of months ago, Otis began to quickly outgrow his AFOs, or Ankle Foot Orthotics--they're the braces he wears to help keep his feet in alignment when he does any weight-bearing exercise. When we got his new ones in about a month ago, he began not wanting to bear weight on his left leg. Otis typically really loves doing walking and standing exercises, so this was new. The new AFOs were actually not the style we had been expecting--there had been some sort of mistake--so we worked with his orthotist to order some new ones. While we were waiting for the new-new AFOs to come in, we continued to blame his not wanting to stand on the faulty AFOs. They weren't broken or misshapen or anything like that--they were just not what Otis was used to wearing on his feet.

However, because Otis also has bilateral hip dysplasia (due to being unable to weight bear on his own and run around like other kids his age, the ball each of Otis's femurs do not fit into their sockets all the way) and we began to wonder if the dysplasia was maybe worsening and causing him discomfort.

It was out of this concern that, last Wednesday, we took Otis in to see his orthopedic doc for a consult and some x-rays. The x-rays revealed that his hips had NOT worsened (the good news), but that he had a slight fracture in the middle of his left femur (the bad news). Over the course of Otis's life, he has been on 15 different antiepileptic drugs which, over time, leach minerals from the bones. This, in combination with not being able to walk or get the daily weight bearing that typically developing kiddos his age do, as well as the 2.5 years spent on on the nutritionally incomplete Ketogenic Diet, has given him osteopenia, the precursor to osteoporosis. (Some of you may recall Otis's first femur fracture back in February of 2014--just 3 months before we moved to Colorado in pursuit of medical cannabis to treat his seizures.)

The ortho doc said that the break appeared to be about 2-4 weeks old and was, fortunately, healing very nicely on its own. Despite this, he decided to put Otis in a temporary brace to keep his legs in place until it healed. He worried that "should he have another seizure" before the fracture was completely healed, the fracture would become worse. He unfortunately failed to seriously consider that Otis has convulsive seizures on a daily basis--and had been doing so for the past 2-4 weeks, or as long as the fracture had been there.

Not long after we got home from that visit, Otis had a convulsive (tonic-clonic) seizure while wearing the brace. Because the brace restricted his legs from being able to move the way they needed to, it caused his left femur to break further, making a haunting sound and sending us straight to a local ER via ambulance.

Teachable moment: Seriously…DO NOT try to restrain someone who is having a seizure.

The first responders arrived within minutes, followed very shortly by the Manitou and Colorado Springs EMTs. There were a total of 9 emergency people in our living room taking care of Otis. One of the EMTs from the Manitou Volunteer Fire Department had actually met Otis before and was already familiar with him and his history of seizures. (When we first moved here, we were invited to speak at the Manitou Springs Volunteer Fire Department to introduce everyone there to Otis and help everyone there to become familiar with him.) Everyone was amazing.

We spent some time in the ER before Otis was admitted to the pediatric unit. Ryan stayed that first night with him while Kathy went home to get some sleep. On Thursday evening, Otis underwent a surgical procedure to have a stainless steel rod placed in his femur (a procedure called "elastic nailing"), and received a spica cast which he will wear for the next 6-8 weeks. 

We were able to bring Otis home from the hospital late Friday afternoon. He had a rough first night and day at home--lots of big seizures, discomfort, and just plain not feeling good. We’re hoping his recent increase in seizure activity subsides soon and that it is only temporary, as he continues to withdraw from from anesthesia and other meds he was given in the hospital. He needs to be repositioned about every 2 hours. Because he is nonverbal we’re not sure, but he doesn't seem to be in much pain at this point. Motrin and Tylenol seem to be keeping it at bay. He does, however, seem exhausted and slightly bummed…as are Kathy and I.

While we always wish life could be easier for Otis, he continues to be the sweetest person we have ever known, and inspires us daily with his spark and his resilience. He reminds us constantly what really matters in life.

Just minutes before the seizure and fracture, wearing that stupid makeshift brace. 
[Insert curse words here. All of them.]

  

Splinted, in the E.R. late Wednesday night

Getting ready to go into the O.R. late Thursday afternoon

Room with a view

Friday

Home

Spring

Otis had a pretty rocky winter, but has enjoyed a much better spring so far. We are so happy to see and share that sweet sunny smile again!

Happy Easter!

Otis as Harvey?

A bit late, but here's a picture and video from July 2016

More to come...some time!

Love y'all!

Long time no post...

While we try to figure out how to play catch-up following our ridiculously extended absence from this space, please enjoy this video of Otis dancing with Daddy in the UpSee!

Catalog pose.

Hippotherapy!

With the help of his outpatient therapy providers, we have had the good fortune to be able to enroll Otis in weekly hippotherapy (equine therapy, or therapeutic riding program) for the summer. The place we take Otis is about a hour's drive from where we live, so there have been weeks when, by the time he and Daddy arrive, Otis has been too tired to get up on the horse. I think we're 2 for 4 at this point--two pretty good sessions where he was able to get up on the horse and engage, and two others where either sleep or a big seizure (from being sleepy from the car ride) have kept him from being able to participate. 

Here is a super short video Daddy took of his most recent session. We are so proud of our big strong boy, and so grateful that he has been given this opportunity!

Roxy

Otis has a new buddy at school! Roxy, the school's new service dog, was brought back to Manitou by O's preschool teacher Mrs. J from a service dog training center in Concordia, Kansas. Having Roxy around in O's preschool classroom each day has really made us want to start taking steps to get Otis a service/companion dog of his own. Awwww, Roxy!

Happy Easter!

The day unfortunately started off with a few of the bigger seizures that we hadn't seen in a very long time. Thankfully, the rest of the day was very good. Otis finished strong by sitting up all by himself (with some help holding his feet down) on his peanut for over half an hour. Go, Otis!

Here are some little glimpses of the rest of Otis's Easter weekend.

Happy New Year!

It's been so long since we've updated that it's difficult to know where to begin! 

Otis had a really difficult 2015. An enormous increase in the frequency and intensity of his seizures sent us all into survival mode, especially during the second half of the year and over the summer. By August, he was having up to 30 short (5-30 second) tonic and tonic-clonic (grand mal) seizures per day. He was miserable, spending most of his time either seizing or recovering from big convulsive seizures. His quality of life was at an all time low. An IV push of a rescue medication at Colorado Children's Hospital helped somewhat, but it wasn't long before the big seizures started increasing again. Things took a sudden and surprising turn toward the better at the end of September, when a 2-day fever reset him. He has been back at his seizure baseline (mainly just his typical clusters of epileptic spasms, or, "the devil we know") ever since. It was so wonderful to see our little boy start to smile again. 

Here is a small preview of what Otis has been up to this year. He loves learning and hanging out with his friends at preschool, and continues to work so hard with Daddy and at PT, OT, Speech and Vision therapies each week. He is getting so big and so strong, and his progress in just the last couple of months since these videos were taken has been incredible. We are working on getting him started with hippotherapy (equine therapy) very soon!

There are so many more updates to share (a move from our apartment into a house with Otis's Grandma and Grandpa Reed, who moved to Manitou last summer, an unexpected job change for me last September, and so much more), but we will save those for future posts. In the meantime...

Eating breakfast in his sit-to-stand

Since this photo was taken, he has graduated to walking with Daddy
just supporting his hips!

On his favorite swings at Soda Springs Park

Off to school

Look who's riding the bus to pre-school now!