Lucas Camilo

After his last trip to the hospital for an x-ray we let Lucas rest for eight days, not moving him anywhere except from bed to couch to bed.  And the down time seems to have paid off!  Last Friday we finally got him back up in his chair and went in to get another x-ray. The doctor was very pleased with the progress — he even showed Lucas the images, and the healing was visible and obvious. Just as significantly for us, Lucas showed no signs of pain the whole time which was a huge contrast to the previous trip to the hospital. So the doctor gave the go-ahead for a return to kindergarten, at least for partial days.

Over the weekend we took a couple short practice trips out of the house. Getting Lucas in and out of his chair is a two-person job now, and he has to slouch down a little to accommodate the big angle of the splint on his hip. But he doesn’t seem to mind (and we were thrilled to be out with him on these beautiful end-of-summer days!), so we went to the library on Saturday and the park on Sunday. We also dragged Lucas along to look at a home for sale in our neighborhood, and he approved because there were birds on the wall. We didn’t explain that the pictures don’t come with the house.

This morning he made his big return to kindergarten. The most heart-warming part was seeing how Lucas’s presence has grown in his absence.  On the first day of school none of the kids really talked to Lucas.  Today we got to school a little early and stood in the hallway waiting for classmates to come in to the building in the morning. When the doors opened, kids flooded in, saw Lucas, and started shouting “Mr. McCullough, Lucas is back!!” Lucas was pretty quiet and maybe a little overwhelmed, but it was amazing to see kids welcome him back into their class!

So much time on the couch that Lucas has taken up reading the NYT, at least when there’s an article about dinosaurs.

First off, we want to thank everyone for the outpouring of support following Lucas’s broken leg.  From the blog and Facebook comments to the physical cards that have been coming in the last 4 days, Lucas has been really enjoying all the attention. After his latest batch of correspondence arrived today Lucas announced that he had received “a zillion of cards!”

It’s especially important since having a broken leg is no fun.  Lucas probably won’t get out of the house much over the next few weeks… in fact, it’s looking like he’ll be mostly hanging out of the couch. For a kid who loves lying on the couch reading books and who is not that mobile anyway, its not the worst thing in the world.  But after less than a week, there’s a bit cabin fever (for all of us) setting in.

So what’s happened since we last posted? Lucas rested up on Labor Day and welcomed the arrival of our friends from DC, Alexis and Mackenzie.  The pain from his broken femur seemed to be decreasing, and having more company around definitely made recovery a little easier. By Wednesday morning we decided that Lucas was feeling well enough to make it to his first day of kindergarten!

Getting up in the wheelchair was a challenge that involved some tears, but Lucas was in pretty good spirits once he was up.  We decided that he’d only go for a couple hours since constant transfers to and from the wheelchair just weren’t going to be possible.  It was important to be there on the first day — Lucas could see the other kids in his class, and they could see him and hopefully remember that he’s part of their class in his absence. But for us it was a little anti-climactic because of the shortened day and the reality that Lucas’s first year of elementary school wasn’t going to kick off the way we had imagined.

On Thursday, Burke took Lucas into Children’s for some more x-rays of the leg (click on the picture to enlarge and see the area of the break).  It was a brutal journey, with lots of grimaces and tears every time Lucas got moved around.  The docs concluded that the splint had been placed a little low and therefore wasn’t giving his broken femur the stability it needed.  So they started to add to the splint and in the process began to wrap up Lucas’s midsection, diaper and all.  There was an awkward pause when Burke asked how we were going to change that diaper and subsequent ones; then they unwrapped him and pondered the situation for a while longer before coming up with a plan B.

The newly extended splint required quick adjustments to the wheelchair to fit Lucas in, and the whole experience made us realize that the best way to expedite recovery (and avoid the painful tears of anticipation) would be to avoid getting up in the chair for a while.  That afternoon we sent a note to Lucas’s teacher saying he would likely miss the first few weeks of school.

Once the decision was made, we hunkered down in the house with support from Lucas’s nurses, constant attention from our out-of-town guests, visits from Burke’s parents (not to mention a whirlwind stop through by Lucas’s cousins) and lots of books, stickers, cards and games.

Lucas doesn’t seem to be feeling much pain but he’s still having his ups and downs — at times he’s like his usual self, goofing around and acting as if nothing is wrong.  Then suddenly he seems frustrated and ansty, and its hard to figure out how to help him feel better.  We recognize that we’re in for a long ride in the coming weeks (months?) and we really appreciate all the support and encouragement from our friends and family.

Reading a card from the full staff at the Social Justice Fund NW, including a T-Rex drawn by Sunny who says “Lucas is RAWRsome!”

With Alexis and Mackenzie, enjoying new finger-puppet dinosaurs

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Instead of part 2 of late summer stories, we come with less exciting news: Lucas has a broken leg.

On Saturday, a nurse was transferring him, and he suddenly exploded in tears.  She laid him back down on the couch, and after a bit he was consoled.  Later she tried moving him again and the same thing happened.

When Krista and her mom got home (Burke was at his friend Spencer’s wedding in California), Lucas started crying inconsolably again.   Lucas doesn’t often cry and only throws the occasional tantrum.  He often bears pain – a brace that’s too tight or a toe that’s buckled and squeezed in his shoe – without telling us.  But this time he was clearly flinching, crying and making the most terrible pained expressions every time we got near his left, so we knew it was serious.

We took him into the ER and got there around 6:30 pm.  Even though they got us a bed quickly, things moved slowly in the hospital.  It took a long conversation with the resident for him to declare that Lucas needed an x-ray of his left leg.  By 10 pm we did the x-ray.  By 11 we finally heard back from the doctor and it was what we suspected: Lucas’s femur was fractured, likely in a small torque that happened during the transfer.

This is something we have know is a risk because of Lucas’s osteopenia (low calcification of bones due to not bearing weight), and indeed other kids with myotbular myopathy have broken bones in similar situations.  As his limbs get longer and heavier but his muscles remain extremely weak, the possibility of a leg getting trapped in a compromising position becomes more likely.  Knowing this doesn’t make it any easier for Lucas, though.

This doctor didn’t know what the orthopedic team would do — possibly surgery, major casting, or splints.  Although Burke was at a wedding reception, we spent a lot of time on the phone, including discussing what it would mean for Lucas to have a cast that secured his hip and knee joint– according to the nurse, such a cast would wrap around the waist, go down the leg and over the knee.  It was a terrifying proposal, since Lucas’s leg turns out while he lies down (in a sort of frog-leg position), but rotates in to sit in his wheelchair.  Which position would they build the cast in?  Would it make it impossible for him to get up in his chair, or impossible to sleep?  To our relief, they ended up choosing the splint option, which just connects his upper and lower legs.

Lucas has been an amazing sport through this whole ordeal.  He is very clear with us when he is in pain — every time we move him.  He had never said “oww” before this, but now if we make a movement in the direction of his left leg, he starts off with a preventative “owwwie, owwwie, owwwie!”  But if we’re not moving him or changing his diaper, he’s pretty content.  At about midnight in the hospital, after he’d had a dose and a half of oxycodone and his leg had been splinted, he got very cheery and started telling everyone what a good time he’d had getting an x-ray.  (Not true — it was extremely painful as they held his leg in different positions.  But paleantologists use x-rays to study fossils, so perhaps in hindsight the experience connected him to his beloved dinosaurs.)  He chirped about how much he liked watching Toy Story on the hospital TV (because there’s a T-Rex that tries to scare Woody!)  He was thrilled that a new, special van for medical transport was coming to pick us up and take us home.

On Sunday Gramma Susan did a lot of book reading, and she was able to help move Lucas in and out of bed, something that is now a two person job.  She left for Portland right as Burke got back to Seattle having gotten an early flight home from California.

Fortunately Lucas has a lot of things that he can do while lying down– like reading books, watching Winnie the Pooh movies, and doing puzzles on his iPad.  So we’re settling into a less mobile routine for a few days.  Or weeks.  School starts Wednesday, but given how much it hurts to move, Lucas may have to skip the first few days of kindergarten.

Lucas loves getting mail, so “get-well-soon” cards could help make this ordeal a little more bearable.  Our address is 2943 36th Ave S, Seattle, WA 98144.  Thanks in advance for the love and healing thoughts.