Lucas Camilo

It’s been six days since Lucas got released from the hospital after his spinal fusion surgery. Here’s what he has to say about it:

“Things have been going pretty well. I’m been staying on the couch a lot listening to playlists and audio books and watching stuff.

“We’re still figuring out getting up on my wheelchair. I’ve been feeling a lot of numbness in my left foot and we don’t know why that is. That makes me a little nervous about going back to school.

“I’ve been enjoying watching fun shows and movies with Ida, like Carmen Santiago and the really funny new Netflix musical ‘Leo’ about a lizard.

“I got a visit from my old friend Jonah yesterday, and on Thanksgiving I got visits from my cousins, Aunt and grandparents. It feels good to see people after being in the hospital for so long.”

Indeed, the most frustrating thing has been the challenge of sitting up in his wheelchair. In the early days of his return he would be up in his chair for 30 or 45 minutes and suddenly get pale and his heart rate would drop. We’d get him back down on the couch and his color would come back. That only happened a couple times but the problem of numbness in his left foot has persisted. We’ve reached out to doctors and physical therapists and mostly they agree that it must be positional, something that’s cutting off blood flow to his foot. But we’ve tried lots of things, from propping his foot up on decks of cards, shifting his position in the chair, and using multiple different seat cushions, and nothing seems to work so far. We got a glimmer of hope yesterday when he was up for nearly 2 hours in his wheelchair without any noticeable numbness… but then today the left foot was back to its old tricks 10 minutes after getting up. He can still last up to an hour even with the weirdness of his foot feeling numb, but then he asks to get down. In order to return to school he’ll need to be able to sit up in his chair for 4 hours, so he’s got a ways to go.

Other signs are generally good. He’s still having some pain but it’s improving. His energy is good during the day, and as he mentions above, he’s figured out ways to keep busy and entertained while he spends most of his time lying down. Lucas’s shockingly good spirits in the face of so much  — first pain, now boredom and upheaval of all our routines — buoys us on the hard days. He remains an amazing kid, living like it’s no big deal in his sometimes difficult body.

Lucas helped Jonah with word games and questioned whether his mustache was real

We’ve noticed that our cat Raven has been acting very strange while Lucas is on the hospital. Humans haven’t been around that much, and she can probably sense that there is heightened anxiety around the house when we are there. But more than anything, she missed Lucas. Well, now that he’s back in his regular spot on the couch Raven is snuggling in with him, content at last.

Lucas’s last day at Children’s went about as expected — a classic hurry-up-and-wait. Some doctors from the Orthopedics team came in at 7 am as Lucas and I were still waking up to tell us… nothing really. He’d get discharged at some point today (which we already knew) but needed to get the final go-ahead from the surgeon first, “probably sometime after noon…” But then by 10:30 someone came in and removed his last drain, followed by the IV, and we were clear to go. We started frantically packing up everything strewn about his room, picked up his medications… but of course the discharge papers still had to be signed, which somehow took another 2 hours. Finally, around 1 pm we loaded Lucas in his wheelchair (pain not too bad!), grabbed the “get well soon” balloon that Ida gifted him, and headed out the door.

Heading out!

Now that we’re home it seems like a real whirlwind. Overall, given the intensity of the surgery and the usual nature of in-patient hospital stays we feel pretty good about where things are at. Hopefully Lucas will be back up in his wheelchair soon, blogging himself about how his new, straight, titanium-rod assisted spine is treating him.

It’s been 4 days since Lucas emerged from the spinal fusion surgery and he’s just about ready to go home.

We’ve definitely had some ups and downs over the last 24 hours. Lucas had a rough night of sleep on Thursday so when the wheelchair tech along with physical and occupational therapists busted into our room at 9:30 am on Friday he had barely done his morning Wordle and was not at all happy about their suggestion that it was time to get up in his chair. But he didn’t have much choice, and so after dealing with a broken ceiling lift (further stressing Lucas out), all four of us managed to get long, lanky Lucas — with his newly straightened back — into his wheelchair for the first time since surgery. Some modifications had already been made, so the chair fit him OK, but it took some more tweaks before he started looking halfway comfortable sitting up. He lasted about 15 minutes, complaining the whole time — both about the pain and all the people running around messing with him and his wheelchair.

So, not a great first experience but it gave us hope that he’d last even longer the next time he got up. Unfortunately, that wasn’t the case. Instead, attempt #2 that afternoon lasted less than 10 minutes; he complained that the pain was immediate and intense. After he got down, we couldn’t help feeling bad about rushing him to recover, and also discouraged about how far off the possibility of spending an hour in his wheelchair (which is necessary to get home) seemed.

Things started looking up again later that afternoon when a very cuddly service dog named Lucy came by to visit. Meanwhile, we heard from the medical team that Lucas had checked all the boxes for discharge… except for the big challenge of showing that he could sit up in his wheelchair for a sustained amount of time.

So this morning we gave it another shot. This time, right before getting up he got a dose of Oxycontin to mitigate the pain. The transfer from the bed was much smoother, and as soon as he was settled in his wheelchair we held our breath until he said, “The pain…” And we said “Oh no!” and he said, “… isn’t so bad this time!”

Sure enough, he lasted for 45 minutes and though the pain eventually kicked in he was still doing his daily Heardles when we suggested that he get down to rest. At that point we were hoping he could saving his energy for a ride home in the afternoon, but as we write the sun is headed quickly toward dusk and it seems like we’ll be here another night.

Thanks for the pictures, playlists, and message. Lucas is groggily taking it all in. It is such a sweet part of our job as parents, funneling all the love his way.

Lucas is making amazing progress in his recovery. We didn’t know what the days after surgery would look like but it’s fair to say that he’s doing better than expected. In particular, he continues to be very animated when he’s awake, with lots of strong opinions. Given all that his body has been through and all the drugs they’re pumping through him you’d think he’d be out of it. Instead, he’s been lively and engaged much of the day (while also taking lots of naps.)

In the morning one of his IVs was removed  as well as one of two surgical drains later in the day. He’s also no longer connected to any heart monitors. That makes the job of moving him around a little easier… but it’s still a lot of work. And that’s probably why he was often grumpy today. More than once he told a nurse or respiratory therapist to “stop messing with me!”, at which point we’d chuckle and explain that he’s just showing off how feisty he is coming out of surgery. They weren’t offended, and overall we’ve been so grateful for the skill and thoughtfulness of the medical professionals working with Lucas.

Meanwhile, he got visits in the morning from Nonna and Papa as well as Aunt Ashley…and, the head of security at Seattle Children’s dropped by (who also happens to be an amazing local drummer and friend of the family.) Ida was also back for the second day in a row to hang out with her beloved brother. She insisted that she come to the hospital right after school because she missed Lucas so much. The two of them get along well most of the time but it sometimes it takes a bit of hardship to bring out their maximum love and sweetness towards each other.

Another highlight of the day was getting Lucas into a sitting position in bed… not once but twice! The first time felt especially triumphant (even though it was only for 4 minutes) because it showed that he’ll likely be able to sit up in his wheelchair soon. Someone from the orthopedics team who observed said that he was on pace to go home in the next few days, which would be sooner than expected. He lasted even longer the second time we sat him up, motivated in part by Ida’s dancing and cheering and balloon waving. After that he crashed, but still it was a positive day over all. Thanks again to everyone for you messages of support!

Lucas wants everyone to know… “the surgery went well!”

Yesterday began at 5 am when we made coffee and started mobilizing for Children’s. The morning went pretty smoothly and it was only right when we prepared to say bye to Lucas and leave him alone with the anesthesiologists that he got very nervous… but then the drugs kicked in and he was out, and we were pushed out of the room as I futilely tried to reiterate suctioning instructions one last time.

Getting ready for anesthesia

Then we had to wait. It turns out the actual surgery didn’t start until around 10 am, as it took a while for full sedation to kick in and to get him in the right position. At around 2 pm we got a message that surgery was wrapping up, and soon after that the surgeon came out to let us know everything had gone as planned. Among the things we learned is that they used the longest rods in stock to support the fusion of the vertebrae. In other words, Lucas is really tall! And, now he’ll have long pieces of titanium inside his body keeping his torso straight and aligned.  We also learned that he lost a lot of blood (as expected in major surgery) but that they hadn’t yet done a transfusion… thought later in the evening his red blood cells were still low so they did end up doing a transfusion.

We made our way to the ICU and soon Lucas was rolling in on a gurney with a team of doctors and nurses in tow. He was still out, a good things since they hadn’t yet changed him back to his regular trach. Lucas’s biggest concern when talking to the team pre-operation was that he would wake up and still have the hospital-issue cuffed trach in place, preventing him from using his voice. Fortunately, and with some encouragement from us, they changed it out just before his eyes starting to pry open, and he groaned out his first words… “is it over?!?”

Lucas was groggy for the rest of the afternoon but surprised us by having enough energy to immediate start bossing us and his nurses around, making sure he had everything he needed. As many people know, Lucas is obsessed with doing the daily Wordle and managed to do it at 6:30 am before heading back to surgery. The word was “sassy” which suddenly seemed fitting given his unexpectedly spunky behavior coming out of surgery.

Watching a documentary about The Clash

Meanwhile, the drugs kept flowing, helping to mitigate the pain. But the hardest thing for Lucas was the discomfort of having so much connected to his body: tubes draining excess blood from his back, multiple IV lines in his veins, various wires stuck to his body monitoring heart rate, blood oxygenation, etc, a blood pressure cuff inflating every 15 minutes, a foley catheter, and of course his ventilator tube connected to an unfamiliar suction device. On top of it all, nurses and other medical personnel enter the room every 15 minutes to monitor various things. Finally, he also couldn’t lie fully on one side, which is his preferred position for sleep. So needless to say, it was a rough night… by 5 am he gave up on sleeping and requested his audiobook. We’ve been up ever since.

Still, he’s been an amazing sport. Very little complaining despite all the inconveniences. And he’s managed to charm his nurses and respiratory therapists with all his jokes and handsomeness.

As always, we appreciate all the messages of love and encouragement, not to mention all the other ways people have supported us. It was a stressful day but we’re so relieved and grateful to (hopefully) be through the worst of it.

Our family has a lot going on these days and we wanted to share a Lucas-related update. Or rather, we’ll let the man himself tell you what’s up. Here’s what he posted to Handsomeboywrites:

 

Dear fans,

Next Tuesday the 14^th, I’m having a surgery on my back called a spinal fusion. I’ve been having a lot of back pain and this surgery is supposed to help with it. It’s supposed to straighten out the curve I’ve had in my spine. It will make it so I’m out of school for a while and I probably won’t be able to post stuff on HBW, so don’t expect anything in the coming weeks.

I am a bit nervous about what’s going to happen right after surgery. We’ll stay in the hospital for a couple days after it. But I hope it really is going to help with my pain.

I also hope it will help me stay in class and focus longer. A lot of times, I’ve had to leave classes and even leave school early because I’ve had so much pain. I really hope it will help me focus longer on school.

So be thinking of me next week. I won’t be doing a lot, so if you have book, movie or show recommendations, let me know.

See you later,

Yours truly

Lucas.

Needless to say, we’re all a bit nervous about the surgery. Lucas has had a few surgeries before but nothing quite like this. The type of spinal fusion he’ll undergo involves straightening out his spine, fusing together the vertebrae below the neck, and placing titanium rods inside his body to keep the spine straight. As Lucas likes to say, it’s a doozy.

Fortunately, we’ve had great interactions with the surgeon and feel confident that it’s the right thing to do and the right time for Lucas to do it. Krista and I will be with Lucas right before he goes under anesthesia and then right after he comes out of surgery. Ida will be spending the next couple nights with friends and family but is excited to visit Lucas in the hospital on Wednesday. It won’t be long that they’re apart but she still says “I’m going to miss my little Lukey so much!!”

In addition to the couple days at the hospital that Lucas mentions (actually 5-7 days) he’ll likely need to recover at home for at least another few weeks before heading back to school. Because he won’t be able to get up in his wheelchair much during the recovery, he’ll have plenty of time to watch shows, listen to podcasts and audio books, and read jokes and nice messages from friends, family and fans.

If you post comments here or below his post on HBW we’ll make sure he sees them. You can also send emails to lucas@estansbury.com.

And as Lucas says, keep him (and the rest of our family) in your thoughts in the coming weeks.