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By
Loma Cohn We
were given quite a bit of information about the pump and Mike was told
very clearly that it would involve a major commitment on his part. But
he's an adult, and it was his decision. I still had doubts from the
first time we explored this avenue, but supported his right to choose. We
were encouraged by the fact that the pump program had grown and matured considerably.
Mike chose the implant. So, on Sept. 11, 2001, while Mike was in
surgery, I sat with several family members in the waiting room. The
television was on and we watched with horror as the
tragedy unfolded in New York. Mike's
recovery was very easy. The results were initially astounding! His
speech improved dramatically. His walking steadied to the point that he
was able to give up his walker and use a cane. However, these
improvements began to diminish after about two months. We have recently
learned that this frequently happens when the primary problem is
spasticity. The pump apparently is more effective when treating the
problem of rigidity. So
often we are told what to anticipate, but it's phrased in such bland,
non-specific terms that we think, "Okay, we can do this."
For example, when the doctor says,
"You will have to monitor your child,"
we think, "Well, we do that every day, right?"
Wrong. Monitoring
in this case means when you notice more rigidity, you must head back to
the clinic for an adjustment. When the person is getting too little
Baclofen, it's back to the clinic for an adjustment. There's no more
just cutting back or increasing the number of pills. Yet, no one told us
that Mike might have to go in for adjustments as many as two or three
times a week. A
few months after the pump was implanted, the catheter separated from the
pump. He had gone to the clinic several times because of swelling in
that area and was told repeatedly that it was just a fluid buildup. It
wasn't. It was the baclofen leaking. Mike had to have surgery to have it
fixed. The
monitoring warning we didn't get was the most important one of all: When
the pump is refilled or adjusted, you receive a computer printout of the
dose, frequency, refill date, etc.
Mike always brought them home and filed them. It never occurred
to me to read them and because of Mike's vision, he wasn't able to read
them. On
July 24, 2003, Mike had his pump refilled.
Fortunately, he came home immediately after that. Within thirty
minutes of his arrival, he was unconscious. Within three minutes of
dialing 911, the police arrived, and the paramedics a few minutes later.
Mike went into cardiac and pulmonary arrest. The
ambulance rushed him to a trauma center, which fortunately has a pump
program. The doctors turned off the pump, as it appeared Mike was
overdosing on Baclofen. We learned there is an antidote for an overdose.
We faced two choices of treatment:
1) let the Baclofen work its way out of his system, or 2)
administer the antidote knowing there was a significant risk of a heart
attack. We chose the first option. The
physician who had set the pump that morning had made a huge error. It
was supposed to be set to deliver a dose every six hours and was
actually set to deliver a dose every six minutes.
Mike remained unconscious for about 24 hours and was on a
respirator. He seems to have made a good recovery and the only long-term
damage we are aware of is some short-term memory loss. Now
when he goes for an adjustment, he insists the physician or nurse review
the computer printout with him before he leaves. Still,
Mike has decided to have the pump removed.
We have learned that it will take about a year before that can be
done. I understand that the pump has been effective for some people. However, I would encourage anyone considering the implant to explore alternatives before making the decision. |
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