My Face of Courage
October 24, 1997 was a very exciting day for me, the implantation of my BACLOFEN PUMP. Surgery went well. Boy I could feel the difference in my Spasticity. My arms and legs felt better. How exciting. It was two weeks after surgery we discovered there was fluid accumulating around the pump, each day more and more. There was so much fluid we could not see the pump. My doctor drained 500-600cc of fluid off. The next day the fluid was back. Now what? My doctor figured we had a spinal fluid leak. Off to surgery I went to repair it. The fluid continued to come back. It is November 15th, my doctor suggested we try a “shunt” maybe that will help the fluid go to where it should. Guess what it didn’t. Either the shunt is not working or it is plugged. Off to surgery I went. The shunt was plugged. All I kept thinking was my spasticity was more manageable I need to save this pump. I put on my face of courage and kept thinking positive. It’s kind of hard for a 6 year old, but I did.
It is now December and the doctors are puzzled, they can’t get rid of the spinal fluid leak. They decided to call another doctor and he suggested we totally unhook the catheter from the pump and spinal sack and lay flat for 10 days. Well I did, I had courage, my face of courage. After 10 days, off to my 6th surgery. I went to get hooked up to a new catheter. Surgery went well, but after a few days we had the fluid accumulation around the pump again. NOW WHAT?? I continued to keep my happy face of courage.
It is now February and we still have the fluid leak. We decided to remove the pump. The doctors felt they tried everything. I was very sad, disappointed. I really can’t tell you what I was feeling because I knew the pump helped me and I WANTED TO KEEP IT.
In June 2000, 2 years and 4 months later we were on our way to the hospital to get a new pump. Boy am I EXCITED AND HAPPY. I kept thinking I am now 9, my body is bigger and it should work this time. So off to surgery I went. 10 days later here comes the fluid. But now we are a 10 hour drive from the hospital. We called our doctor and communicated over the phone. He said to keep the binder on. We did. There was always about 300cc of fluid.
Now it’s September and the fluid is not going away so the doctor would like to see us. We leave for our 10 hour drive. We got there, he checked me over and suggested we head to surgery for a shunt revision. All went well, things are looking good. We can finally see the pump. I put on a happy face because I have won this battle. WHAT A FACE OF COURAGE.
Four months later, January 2001, I woke up feeling not right. I told my mom I feel very tight. My mom opened my binder and look out the fluid is back. (We had 4 months of no fluid.) Off to the doctor. We went to see what the problem is. Guess what the catheter unhooked from the pump. I put on my brave face of courage because I knew we had the fluid leak fixed and getting hooked back up should be a breeze. My doctor hooked me back up. GOOD AS NEW. It is now 3 and a half years later and I am doing great with my IBP.
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 Important Safety Information Related to ITB Therapy and the SynchroMed II System
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