They discharged Brandon on April 18^th, which was the next day, from the rehabilitation. By the time we got home we immediately went to see his PCP because he could hardly breathe and was so sick, when we got to the doctor his oxygen saturation level was so low that he called 911 to come and get him. They took him to the nearest hospital and admitted him at once. The rehab/hospital had discharged him with pneumonia! I kept telling them he was wheezing and they wouldn’t listen to me. The doctors at the hospital couldn’t believe the rehab hospital discharged him in that condition! Sometimes the doctors are just so bull-headed and they think we are all hypochondriacs!

He finally got better from the pneumonia and the hospital discharged him after a week.  During his hospital stay his doctor that was managing his pump called me and said she thought there was a problem with the pump because of how high the dosages were and we were still not seeing results and he was so sick and vomiting.

They ordered a flow study to follow the medicine going through the pump into Brandon’s spinal fluid. The flow study was finally done on May 2, which is exactly 1 month since his “flu like symptoms” started. When they tried to push the medicine through the pump it wouldn’t go, so they realized that there was a kink or some kind of problem with the catheter. They scheduled Brandon for surgery to replace the pump on May 15^th, so here we have a pump that’s not working and they wait 45 days from the time of the first symptoms and 15 days from the time they diagnose that the pump isn’t working?

Pump failure may cause an overdose or underdose of intrathecal baclofen. The signs and symptoms of an overdose include:

• Drowsiness
• Lightheadedness
• Difficulty breathing
• Seizures
• Loss of consciousness or coma

The signs and symptoms of an underdose include:

• Increase or return of spasticity
• Itching
• Low blood pressure
• Lightheadedness
• Tingling sensation

Following are possible device complications:

• The catheter or pump could move within the body or push through the skin.
• The pump could stop because the battery has run out or because of component failure.
• The catheter could leak, tear, kink, or become disconnected resulting in an underdose or abrupt cessation of intrathecal baclofen. An abrupt stop of intrathecal baclofen can lead to:
• High fever
• Altered mental status
• Returned spasticity
• Muscle rigidity
• Death, in rare cases

I am sure you can understand my extreme worry and frustration considering the above signs and complications of pump failure. Why is it that the doctors aren’t more concerned about liability or better yet the well-being of their patient?