I received a call from the neurosurgeon's nurse this morning checking on Jude. I explained to her that Jude had several attacks this weekend. She said she was going to talk to the actual neurosurgeon and call me back.
It was in fact the doctor that called back (yay). He said that at this point he would suggest taking the pump out. Insert major curse words. He was very nice and understood how frustrated we are for Jude to be going through this. I explained that his therapist again stated she would have Jude hospitalized until they found a solution. I asked the doctor if in his years of placing the pump if he had ever seen someone have this reaction. He said "no". I also stated that I understand that they are grasping at diagnosis with the newest being the autonomic dysreflexia. He said he had a few issues with that diagnosis because he just didn't think the surgery would affect that portion of Jude's body. However the Baclofen flowing through the CNS could. He also believes this is not a reaction to the actual materials of the pump itself. I told him the neurologist stated we could turn the pump off. He responded that you cannot actually turn it off but you could remove all the Baclofen and replace it with saline. Then if the saline makes a difference we know it was the response of the central nervous system and the baclofen. So I think that will be our first action. If that doesn't help then we will go from there. If it does then we will discuss removal.
Happy Birthday Jude..........sorry it has to be so hard.