Wednesday, December 30, 2009

A Conversation with Ben's surgeon

Mark and I didn't get a heck of a lot of sleep last night. We'd set the alarm clock for 6:30 because we had a scheduled phone call with Ben's surgeon at Shriners, Philadelphia, at 7 a.m. Pacific time. I love my "happy pills," though. Xanax. Little peach colored tablets of peace and tranquility. Can't recommend 'em highly enough. Got me through Ben's two months at Children's Hospital four years ago and they're going to get me through this, too. Suffice it to say, I got more sleep than Mark.

So, out of bed at 6:45. Even brushed my teeth. Practiced talking so we wouldn't sound like cavemen when the phone rang. Woke Ben up. (He was adamant about listening to the conversation.) He joined us in the office. (Didn't last through the conversation, by the way. TMI.)

Thrum...thrum...that's our fingers drumming on the desk. 7:12 a.m.

Thrum...thrum...7:22 a.m. Checked emails, no last minute changes from the nurse.

[We first found out about the change in Ben's upcoming surgery a week and a half ago. The worst week to find out something that you need to talk to a doctor about immediately! He was away for the holidays, so we've been waiting patiently for this day to arrive, for our scheduled conversation in which we can ask the 57 questions we've written down (and the few we didn't think to write down). So, you can imagine how hard it was to wait this morning for the phone to ring.]

Thrum...thrum...7:28 a.m. Time to give the hospital a call.

He had it on his calendar for 10 p.m. (Philly time) Glad we took action, it's the kind of people we are. Otherwise we'd be sitting here at the computer picking our noses for 12 hours. Not really productive.

But I digress. (It's a technique. Called "diversion." Get used to it.)

Thankfully, Dr. Cahill was apologetic, patient and had some time to talk. We asked every single question on the list, and a few more. (Reminiscent of our trip to Shriners in May when we spent 3 hours at the spine clinic, all three of those hours being seen, x-rayed, checked, talked with, etc. Definitely not being ignored or quickly moved out the exit door as we had at Children's Hospital.)

Before the talk we'd done as much research as possible. But the technique is new and there isn't much out there on it. Most of what I got was from Susanne, Dr. Cahill's nurse, and from the VBS forum I am a part of. We actually didn't find out much we didn't already sort of know, except one BIGGIE: He will only need to have 2 or 3 lengthening surgeries, not the 14 we feared. (More on that below.)

So here's (finally) the skinny on what Ben's in for, ask questions in the comment area, if you have any.

Surgerical technique: Vertebral Body Stapling with Hybrid Rod
     **This is all very new, innovative and experimental. The staples have been used for about 8 years and the rods for about 1 1/2. Only 12 kids right now have the VBS/Rod combo.**
Purpose: The staples pull the vertebrae straighter, and don't allow the spine to curve more in their predisposed direction, while the rod pushes up on the concave side of the spine to give additional support to the staples/spine. Also, to allow for spinal flexibility long-term without fusion. The rod is adjustable, so it will be lengthened as he grows.
Why the rod?: Ben's curve is greater than 35 now and at that degree of curvature the staples can't do the work on their own.
Rod details: Titanium. It's about 14" long (!) and about as big around as a pencil. It's place about an inch or two to the side of his spine, hooks onto a rib and the lamina of one of his lumbar vertebrae.
Staple details: Titanium nickel memory metal. Open up when iced and go back to their intended C shape when warmed up to body temperature.
Surgery details: 6 hours all together. Rod first. Inserted from the back. One small incision in the small of his back. One longer incision (4") in his upper back, over his ribcage. VBS next. Ben will be turned on his side, his lung collapsed, and several small incisions will be made in his side. Staples inserted from there. A chest tube will be placed at the end of the surgery to reinflate his lung.
Recovery: 5-7 days in the hospital. Chest tube removed day after surgery (this is apparently the worst part). Catheter removed day after surgery. Breathing exercises are the most important part of in-hospital recovery.
Lengthenings: Every 6-9 months for a couple years. At that point his spine will hopefully have acheived the majority of its growth. We'll assess it at that time. Remember, this is a VERY new technique, so "we'll just have to wait and see" is going to be the answer for a while.
Lengthening surgeries: 2 hours in and out. Overnight stay in the hospital and then home.
Long term goals: No more brace wearing. The rod is removed at the end of the growth. (No fusion occurs.) Staples are left in. Ben's spine is straighter and he didn't need fusion and has flexibility and full growth.
Risks, overall: The rod breaks after it's been in for a while (several years) and needs to be removed or replaced. Infection, especially with repeated surgeries.
Limitations in activities: NO sky-diving, bungee cord jumping, trampolines, off-road vehicles, jumping on horseback, rock climbing, ice hockey, contact football/sports, possibly Aikido.
What if it doesn't keep his spine from getting more curved?: Fusion surgery.
What if we get to Shriners in February and it's already at 45 degrees?: Fusion surgery.

Plan for February's surgery:
Susie, Mark and Ben fly to NY and stay with Grandma Joyce Feb. 11-13.
Go to Philadelphia Feb. 13.
Check-in Feb. 14 for x-rays and pre-op stuff.
Surgery Feb. 15 7:30 a.m.
Check out Feb. 21-23.
Stay at Cousin Hana's until post-op follow up visit, around Feb. 28.
After that, Mark returns home and Susie and Ben go up to NY to stay at Grandma's for another 5 or so days.
Susie and Ben return home around March 4.

That's it for now!
(Gotta go feed some very hungry animals outside...poor guys!)


Sandy said...

Wow, Susie... that's a lot to digest. And it's such a long time away from home. But thank goodness for a plan. It sounds like Ben is in the best hands possible. And what of Harry and Toby for the month you're gone? If there's any way we can step in and help, please let us know. We'll be happy to be able to do something to help you all get through this.

:-) Sandy

G said...

Wow... such a lot to sift through - I can only imagine what it is like for you. It sounds more positive than negative, which I am very happy about. Let me know if you need anything for when you get back - some frozen homemade meals or something?

Jenny said...

Wow, that is a lot. I have to tell you that I felt myself go into a bit of hyperventilation/panic attack at the words "collapse his lung"... I can't imagine what you must be going through. I'm with G, I'd love to offer you some frozen homemade meals. Or if we could take Toby for a day? Or if you need someone to come play with the horses? Or just someone to email a brain dump to that you don't necessarily want to post to the world.

I'll write those dates on the calendar to send some positive energy out into the world for you guys.

bodegalee said...

((HUGS))... thinking of you and your whole family, esp Ben. Let us know if we can help in anyway!

Susie (aka Three Boys Farm Mama) said...

Thank you all for your ((hugs)) and support. We'll let you know as we get closer about meals. I think that that will be great when I get home from Philly. (My mom loves to cook and I'm sure it won't be a problem while she's here. And Mark is good at throwing together burritos and mac'n'cheese for the guys.) But, lately I've noticed a distinct lack of interest on my part in cooking. Especially the preparing and planning part. I've been hiding in my crafting, as you know.

The offers of playdates for the boys we'll definitely take you up on. Both would love to be whisked away by we'll make sure to plan something. Thank you!!

Krylands said...

Milo and Owen are jumping on my bed for the thousandth time and it is driving me crazy as I try to read through and digest all that you are going through. I'm screaming at them to STOP IT when Owen runs in, "MOM, I just touched the ceiling for the first time."

I'm picturing a day when you can all collectively jump on the bed of your lives, putting this insane time far behind you. Please know that I am holding you in my heart even though I cannot hold you in person. We LOVE LOVE LOVE you, and unfortunately, cannot offer much more than that at the moment (I'll send you a FB note.)

Your blog is amazing. You guys are amazing.--T

Krylands said...

P.S. We can vouch for Feb. 15th as a superbly perfect day for surgery. On that very day 13 years ago, my mom received her heart transplant. We'll be thinking of you and Ben and the long road that is bound to follow...