Something Was Taking My Son Away From Us. Part 2

                                       The Horrible Hospital

  Our son was terribly sick. We knew that he was in serious trouble so we rushed him to our local hospital. After doing a brief exam the medical people at the local hospital told us that our son was indeed sick, but it was beyond anything they could do. They sent us to another hospital an hour away from us. On the way to the hospital my son had his first grand mal seizure.

  When we arrived at the new hospital we were told that all they would do that night would be to make sure he was stable and keep him alive. They took down the history of what had happened. Once again we made the mistake of using the word hallucination when we described his dreams and this was going to cause us grief in the next few days.  We arranged for my wife to stay with him and I would come as soon as I could after teaching.

   When I arrived at the hospital the next day I heard interns and nurses talking about some whinny little boy and what a pain he was. They pointed in the direction of my son's room.When I made it to the door of my son's room I was met by my wife. She was way past angry. She told me that early in the morning nurses and interns tried to get an IV started in my son's arm but couldn't find a good vein. She said that they poked him several times and were increasingly more annoyed when he cried and complained each time they poked him. She said they poked and prodded him most of the day. She said that the entire staff acted like our son was the worst patient they had ever had and frequently made comments about how uncooperative he was.

   When I arrived I heard an intern ask my son if he had decided to stop being as much of a baby. My wife took me aside and was very distraught when she told me that the people in the hospital kept doing "tests" on him but refused to tell her what they were other than the MRI. Meanwhile they administered something to make my son sleep so he wouldn't thrash around.This worked well on calming my son but they missed observing what we brought him in for.  I had not taught long enough at my school district to have any sick days so I had to go home and come back after teaching the next day. I reluctantly did. Now I was worried about my son and my wife who was nearing the end of her rope.

When I arrived at the hospital the next day, as I entered my son's room it was obvious that he was not well liked. The interns and specialist would come in and make comments on how he had finally stopped crying and asked him when he would start crying again. The doctors told me that none of the tests they conducted showed anything. When we again asked what the tests were they said "Oh just the usual tests" They told us that there was one more test to do and that it was a spinal tap."

   When it came time for the spinal tap the resident told us it would make it easier if we helped out with the procedure. We wanted to be with him as by this time we became afraid for our son to be alone with any of the hospital personal.  My son was very afraid but allowed me to comfort him until he saw the long needle. My wife, son and myself became  very afraid. They asked me to hold him as they attempted to insert the needle. This became a nearly impossible activity. The Resident tried to insert the needle 4 times and could not get any spinal fluid. Each time she couldn't get anything she pulled the needle out she scolded him for being such a baby because he was crying.  By the 5th time she was able to get a little bit of spinal fluid. By this time she had twisted his body in to a pretzel like position. She blamed my son for only being able to get a small amount of spinal fluid. All of a sudden she said "Why are my gloves so wet and look at the floor?The floor's wet. It must be his spinal fluid. I must not have done it right." I guess it wasn't his fault after all. I was so angry that I could hardly stand there but my responsibility was to comfort my son.

   At this moment the on call psychiatrist came in to the room where they were doing the spinal tap. Without a greeting he asked the interns and resident where the child was that he needed to interview. The Resident said "we expected you 4 hours ago." He said " I had an emergency come up. I am here now."  He said look I don't have a lot of time. The Resident told him that my son would be done there in 10 minutes.

   As soon as my son made it to his room the psychiatrist started grilling him. My little boy barely knew his own name and this man kept a steady stream of questions that  would be hard for anyone to answer because he asked them so quickly. He suddenly asked us to leave. He was with our son for 15 more minutes and then asked to speak with us.

   In his interview with us after a few general questions he asked us about the word we used by mistake "hallucinations." We told him several times that it was not the word we meant to use. We tried to tell him we only meant his dreams were vivid. He then said "You say he experienced a grand mal seizure. How come he hasn't had one since he has been in the hospital?" We were not sure. We hoped it was a one shot thing. He then told us "that he would review what he learned from us and  get back with us the next day." My wife looked at me after he left us and she said "Do you get the feeling that he thinks our son is insane." I told her I had the same feeling.

  Neither of us slept much that night. I had no other choice but to take the next day off....without pay so that I could be in the hospital early enough so that I wouldn't miss the psychiatrist. I didn't need to be so anxious to get to the hospital early, as he failed to show up until just before noon. When he did show up he told us what we expected and that was that my son was mentally ill. He told us he wasn't sure exactly what specific mental illness he had ,but that he would determine that down the road. He said "You did say your son had hallucinations."  He gave us a prescription for medicine that was anti-hallucinogenic. We looked at the prescription and my wife asked him for a list of the side effects. My wife pointed out that the side effects were the same symptoms that my son was experiencing. He said "well you don't have to have him see me."

  We asked if there was a psychologist on call that we could see and they sent one in. She was the only professional at the hospital who acted professional. We told her that there was no way we were going to have my son take the medicine on the prescription. She agreed and after reviewing things  she told us in her opinion our son was not mentally ill.

   We finally saw an attending physician who told us that all the tests were done but still refused to tell us what tests were run,and that nothing was found. He also told us that the only way that they could test for a seizure disorder was to test during a seizure. He released our son but arranged for my son to be seen at a Seizure Disorder Center at a Medical center in Atlanta.

  We left the hospital with our 10 year old son who now lost 85% of his memory. He could talk in simple sentences, independently use the restroom and feed himself. He needed help with everything else. About 5 miles away from the hospital he had a grandmal seizure that lasted a minute and a half and took his ability to speak away. He would sleep for 5 minutes and then his speech recovery would begin. It would  take him about a half an hour to recover his speech. He was to have increasingly higher numbers of seizures as the days went on for a high of 12 grand mals a day by December..

  We took him to see the specialist at the Seizure Disorder Clinic several times. Everyone was kind to us but told us the only way they could know for certain what was going on with our son was to assess him while he had a seizure. He never did at the clinic.

  We were glad of two things 1) our son was still alive and 2) he was very happy except when he was having and recovering from a seizure. We were terrified that our once very bright and very social child was now at a developmental level of an early toddler. We were so alone. No one could tell us what was wrong with him, how long it would it take for him to get better or in fact if he would ever get better at all. We wanted and needed answers and none were there. To make things worse I teach students who have profound mental challenges and I had visions of having my own son in my classroom when he reached High School.