Baclofen Pump (better late than never)

On Wednesday June 23, 2010 Grant had a baclofen pump placed. Baclofen is a muscle relaxant that he has been taking for quite a while now to help with his spasticity. A couple years ago, it was proposed by his rehab doctors to have a baclofen pump placed to help by delivering a continuous dosage throughout the day. He had a trial test done in May of 2008, but it took me 2 years to get up the courage to put him through this surgery. His muscles and tendons have been getting tighter and tighter, and because of that his orthopedic surgeon wanted to do a bunch of tendon releases. That made me even more nervous. I didn't want my perfect little boy sliced and diced all over his little body. So I made the decision to suck it up and get the baclofen pump placed in hopes that with some good PT we can loosen his muscles and tendons to prevent/postpone any tendon releases.
The surgery went really good. He has a large incision from his belly button and out to his right side about 4 inches, and another incision on his back that is about 1-1 1/2 inches long. Since he is so skinny, you can see the pump very clearly. It looks like a hockey puck was implanted in his stomach. We were in the hospital for 2 days and then got to come home. On the way home is when the problems started. He threw up 3 times on the way home and continued throwing up multiple times each day until we took him back to the ER on Sunday afternoon. By that time he had become pretty dehydrated. Once we were finally seen (2 1/2 hours to even have a dr. look at him) they ran a bunch of tests and started him on some fluids. It was determined that he just picked up a stomach bug when we were in the hospital and was nothing related to the pump itself. We spent another night in the hospital getting more fluids and then came home the next day. I can only imagine the pain he was experiencing with throwing up while fresh out of surgery with two sets of sutures. He was a trooper though and was fairly content as long as he had some ibuprofen in him.

He's so scrawny that you can see the catheter that runs from the pump to his spinal column.

He was supposed to wear the abdominal binder for 6-8 weeks after surgery to help keep the pump in place. I have continued to keep it on him. He tends to get a CSF bulge on his spine if he's upright too much. The binder helps to keep that down, and helps to reduce the pump bulging out too much.

The rest of the summer we made regular trips up to Primary's to have his pump adjusted. They started him at a low dose and then slowly increased the dose every week. Luckily for us, they can set the pump to automatically adjust after a week, so we didn't have to drive up each week, just every other week. It has been a slow process and it hasn't been until his last appointment at the end of August that I finally started to see some differences. We are getting close to an ideal dose. Now we start with the intense PT. :)
Since we would be spending so much time at the hospital, and I would be dragging the girls with me, I decided to try to make it a fun experience at the same time. Each time we went up, we planned some sort of activity to look forward to after the doctor appointment. This made the wait time seem much more bearable. While we were there waiting, we did try to have as much fun as possible. Since it is a children's hospital, they do have a good assortment of toys to keep the kids busy.

Mikkele drew on the chalk boards a lot. Everyone got to have their picture taken by their name art.

We met up with my friend Michelle at the Gateway splash pad.

We went to lunch....

We visited an old favorite park....

We went to the aquarium....

We also stopped and visited with other friends and family. It wasn't the most ideal way to spend our days in the summer, but we made the best of it and still had a great time!