Friday, January 13, 2012

What we know so far (cross-post)

Well. It was a long wait to get a surgery date, but we finally got the official call on Monday. Ben will have his SDR surgery on Wednesday, January 25th. Usually, they do these surgeries on Thursdays as there is a lot of pre-op stuff that needs to get done in the days leading up to the surgery. So instead of leaving on a Sunday as we had hoped, we need to leave for Montreal on the Thursday before (the 19th). Ben will have a variety of appointments on the Friday, Monday and Tuesday.

Because Ben's surgery and rehabilitation are being coordinated through Shriner's, pretty much everything is covered. That means that they cover 3 return flights (for Ben, myself and Clarence) and any hotel costs while we are there. They also have volunteers to drive us everywhere.

The current plan is that Clarence, Ben and I will fly to Montreal late in the afternoon on Thursday, January 19th. Ben currently has 2 appointments scheduled for Friday: an MRI (he'll be sedated) and a pre-op appointment at Montreal Children's in the afternoon. We will then have the weekend off (we still need to figure out what we're going to do on those days). Daniel will stay behind at home and will either be with our nanny or with my parents.

(A little side note: I am very active online and have met many other moms that have a child (or children) with CP. And I am going to be able to meet one of these moms during the first weekend that we are in Montreal! She has twin boys that both have CP and they are flying to Montreal to be evaluated at Shriner's on the Friday. They will be staying at the same hotel as us and we are currently working out a plan to get together...hopefully just us moms the first time and then hopefully with the kids and husbands at the pool on Friday afternoon. What a fantastic coincidence that we will be in Montreal at the same time!)

Monday and Tuesday bring more pre-op appointments at either Shriner's or Montreal Children's, the worst being a urodynamics test on Tuesday morning where they test the functioning of Ben's bladder. A potential risk of the surgery is bladder problems so they do this test to get a baseline on how Ben's bladder was working before surgery (at least, that's what I think they are doing!).

My parents will arrive on Tuesday evening to provide whatever support we need during the difficult days of surgery and recovery.

Wednesday morning, Ben will be admitted to Montreal Children's Hospital for surgery. Surgery can take up to 8 hours. And then Ben will be brought to recovery. For 48 hours following the surgery, Ben must lie flat on his stomach. It's only on Day 3 after surgery that he can be on his back with the bed raised or even eat.

On Day 5 (so Monday the 30th), Ben will be transferred to the Shriner's Hospital where he will start six weeks of rehabilitation. After the surgery, Ben will be floppy and unable to move like he did before. We are expecting that he won't even be able to crawl.

At this point, we expect that Clarence will stay with us until a day or two after he has been transferred to Shriner's. Then, of course, he'll need to be getting back home to work and to Daniel.

Once we are at Shriner's, I expect things to settle down some and for us to get into a routine fairly quickly. Ben will have physiotherapy twice a day for an hour. He will also see occupational therapy a few times each week. When Ben is not in therapy, I expect he will still be fairly busy as they have a school there. Also, I'm expecting with all the physical work he'll be doing that he'll need to start napping in the afternoons again. Ben is most excited for the 1/2 hour of pool time each day that he will start on Day 14 after surgery.

From what I've heard, it can be a bit boring for the parent staying for the rehabilitation. I am actually hoping to be able to work while I am there (at least some). I have also downloaded a number of books to read.

We also expect to have a number of visitors. Weekends won't be as busy for Ben as he won't have any official appointments on those days. We are currently hoping that Clarence and Daniel can come up to visit on most weekends. Clarence will stay the nights with Ben and I'll get to go to a hotel with Daniel. My mom has also offered to come up and stay with Ben so I can go home for a few days for some rest and family time with Daniel and Clarence.

I had the opportunity to speak with a mom who went through this with her child last year. It was great to hear what the process is like from a mom's perspective. She had nothing but wonderful things to say about everyone involved at both Montreal Children's and Shriner's. She assured me that the therapists know how to make the therapy fun for the child and that her son had a great time there. Of course, being away from her other children for 8 whole weeks was hard, but it was definitely worth it.

I was also excited to hear that there will be a little girl Ben's age there at the same time. She had the same surgery yesterday so is just 2 weeks ahead of us. Ben absolutely LOVES meeting other children "just like me" so I know this will be a great thing for him...and hopefully a great motivator!

The countdown is on! Just 6 days til we leave and just 12 days until surgery day!


  1. I am so excited for you and for Ben, and I can't wait to read the updates! Also I *love* the Shriners and their whole system. Until we were able to get Medicaid for my daughter, we traveled one state away to a Shriners hospital several times for some services and they were always amazing and helpful and just...wonderful. Best wishes!!!!

  2. Good luck to all of you! I look forward to reading your updates and hearing how everything goes.

  3. So excited and happy for your family. And I am really looking forward to meeting you! What a wonderful coincidence. Happy and safe travels!




  5. Cary, I am so excited and happy for you and your family. This will be quite an experience for all of you and I am sending positive and healing thoughts your way. I love our Shriners here in Portland - they are the BEST! Take care and keep us updated when you can.

  6. I happen to live about a mile from a Shriners hospital myself, so we use their therapy services exclusively for Hannah right now, as the school can't provide anything as helpful until she is actually in school. Love love love Shriners!! I think they weill take great care of you and Ben. Fingers crossed, prayers in action. Can't wait to hear all your news!

  7. You are already leading the way for other parents in this process - such a well-explained narrative on what to expect!

    Keeping your family in mind in the coming days!