Well…it’s been a crazy busy 24 hours, but we are home. I’ll fill you in on some of the details. First off, we did our X-rays on Tuesday morning to see how Ben looks standing up. The good news is that his thoracic (chest) area looks really good. It’s looking pretty straight. His neck is still causing us a lot of issues. It doesn’t look great in the standing X-rays and in person, and there could be a few reasons for this. First, his muscles are incredibly weak from being in the halo for so long. On top of that, we have traumatised his muscles a bit as the result of the surgery. We have seen weird signs of muscle weakness in his left arm and hand, which could hint at inflammation or possible nerve issues, but that seems to be improving with exercise. The other possibility is that we have not taken out a big enough chunk of his vertebrae, which is a bit devastating, but we’ll deal with that after we rule out everything else. We knew that was a possibility from the beginning.
Sitting up was and still is a big concern for us. Ben can only sit straight for 10-15 minutes at a time, so naturally flying home was a huge concern for us. Having said that, our entire team was working hard to get us home for Easter. We kept timing our sitting sessions wondering how the heck we were going to sit on a plane for 5 hours. I think we hit our breakthrough on Monday night when the gang were out exploring the hospital after hours: Ben in his wheelchair, Annabelle in her halo, and Raquel and Vienna in their walkers. It was probably the most unintimidating yet high spirited gang in history! Ben took some muscle relaxers for the first time that night, and we discovered if Ben went on his side we could go for a much longer time. This was a huge breakthrough – it meant less bed time and more chair time. We continued to work hard. Yesterday afternoon it was confirmed that we were being discharged today! We spent the rest of the day saying our heartfelt goodbyes to the amazing staff at the hospital and our beautiful new friends (while I tried to figure out how the heck I was going to get everything on the plane).
The Shriners went to great lengths to get us home safely. They arranged for us to fly directly from Montreal to Edmonton. Normally Hope Air helps with our flights, but they use Westjet who don’t fly direct to Montreal. Shriners didn’t want us to hassle with connections on our own, so they took care of it themselves. Shriners also gave us a top-of-the-line cervical collar for Ben to use if case he felt uncomfortable in the flight. We were also given some traction equipment to use at home. They also called in one of their drivers super early to help us out at the airport today at 6:00 a.m. They arranged to have a wheelchair waiting for us at the Air Canada counter. As usual, every aspect of their focus was on Benjamin’s safety and comfort. Although Ben was on a combination of morphine, Tylenol, and muscle relaxers, it still was a long day. When we got home, he just hopped into bed.
Again, we are so grateful to the Shriners for providing us with the highest level of care I can imagine. This is a private hospital that is available for all Canadians. They are doing amazing things at this hospital – with technology, research, and care. I’ll tell more stories of this in the future! Some people have asked if they could buy Ben a gift or a toy, but I assure you this little guy has been overwhelmed with gifts. We would love it if you would consider a donation (anonymously or in honor of Benjamin.) instead. Under hospitals, pick Shriners Canada. They will send out a letter to Benjamin saying you made a donation in his name (no amount will show). If you do it “in honor of”, you will need this information:
c/o Rig-It Oilfield
5-707 12 Avenue
Nisku, AB. T9E 7M2
We are so inspired by hospital by the magic that takes place at this hospital. I hope to really be able to pay some of that back one day!!!
Even though we are home, I will continue to update the blog with Ben’s progress, other health issues we will face in the future, and interesting insights or inspirations I come across in our hospital world. This is a crooked journey for us, not an expressway, so we will continue to “travel”. If you want, click follow or send me a request on the contact form and you will get an email when I do an update as I will update a little less regularly than I have been. We will be back in Montreal for follow up in 6 weeks. In the meantime our job is to work on building up Ben’s neck strength and range of motion.