The Baclofen Pump Decision

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Even though Faith's x-rays have shown that her hips are stable and have not come any further out of her sockets (especially her left hip), we decided to move forward with the baclofen pump. We felt this was the right decision and that Faith would benefit if the pump helped to decrease her tone.

After making the decision, Rob sat down with Faith and explained to her that she was going to be getting something called a baclofen pump and that she was going to have to be in the hospital. 

She of course, was not too happy about this news and every now and then she would let us know it by yelling, "I'm not going to get a baclofen pump and I'm not going to the hospital."

Rob called the clinic to get the ball rolling and ended up leaving a message. We were surprised when no one returned our phone call right away. 

When we finally did hear from them, they gave us the surprising news. They had made a managerial decision at the clinic to stop putting baclofen pumps in children because there is not enough staff on hand to look after them.

It is my understanding that once a person gets a baclofen pump, the person has to be monitored very closely at first in order to get the proper dosage. The dosage can be tricky as too much can cause decreased tone in areas that already have low tone. For Faith that is in her neck and trunk. There needs to be just enough administered so that the high tone will decrease, and it will help her with her functionality. Too much baclofen can cause harm and even death.

When we first began to explore the idea of Faith getting her baclofen pump, I talked to a mom whose child had one. While she said it had helped her son immensely with decreasing his tone, she also had concerns because there weren't enough people to look after the baclofen pump especially in cases of emergency. This caused Rob and I to continue to pray about it and now in the end, it is for that very reason we can't get the pump for Faith.

We are relieved that we did not go forward with the decision of Faith getting her baclofen pump - especially if she started having problems with it and there was no one who could get her the medical care she would need. There is still concern about her left hip so we will continue praying that it remains stable. As for Faith, I guess she was right, she's not getting a baclofen pump and she's not going to the hospital!

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