Issues in treating everyday accidents - Lessons from Living with Cerebral Palsy.

Once I didn't see a curve at Jackson Memorial Hospital (JMH) and did a 3.4 landing on my knees and my face on the sidewalk. Luckily I only skinned my knee and scraped my lip and nose. But I was taken to the famous, beautiful ER at JMH for X-rays on a backboard with my neck in a collar.

I still can't figure out why, but some how my whole right leg went into spasm after I was in ER for an hour. It might have been because I was tape to the board so tight that it caused the spasms. I couldn't move it after the doctor took the tape off and my foot was contracted, my hip hurt. After awhile the tape was taken off my legs. Slowly the spasms went away. When the doctor came back I have movement from below the knee. But my hip still hurt from spasms. They took me to x-ray. While I was waiting I moved my leg and heard a big "pop" in my hip and the spasms went away

I wasn't all there to tell the doctor to x-ray the whole leg because my hip was hurting so my cervical spine and knee were x-ray. They were negative.

LESSON #1

ALWAYS X-RAY THE WHOLE LIMB WHEN IT IS IN SPASMS.

My hip still hurt when I got in the wheelchair. But I was not about to tell them at JMH ER. So when I got home I called Dr. Tolchin, then the next day I went to see the nurse practioner at my doctor. She said since you can walk it not broken or dislocated. It is still kind of sore

LESSON # 2

Don't just use a cervical collar to on persons with cp to inmobolized the injury. My head and neck were still moving in the collar like a bowling ball.



QUESTION:

If a cervical injury is suppected with no lower spinal cord injuries, why with cp do the lower limbs have to be taped to the board? Can it be done another way to prevent spasms and or contractions. Beside hurting like hell, it could cause more injuries.


The following is a good illustration of that lack of care of a person in a nursing home and the results.

Bill lived in a nursing home for two years before he was referred to the CILSF in a nursing home. He was 57 years old, had cerebral palsy, could walk, had normal or above IQ but non verbal. In his early years he married twice and had five children! He was working as a door to a door salesman, taking buses all over Miami-Dade County. Bill was hit by a car. Since he was nonverbal and lived a boarding home nobody took the time to communicate with him. The neck injury from the car accident became progressively worse. He became a spinal cord quadriplegia.

Doctors told him the progressive paralysis was the result of cerebral palsy. Bill was referred to me by a state Developmental Service Caseworker because she couldn't get anyway. By this time Bill was in a nursing home. ( In the State of Florida it is illegal to place individuals with cerebral palsy in nursing homes) The first time I saw Bill, it took three hours to take his history. Then, it became very obvious Bill was a spinal cord quadriplegia. He had no use of his arms or legs where before he was walking. The pain in his neck and arms were unbearable for him.

It took about eight months to find a doctor who knew cp. The Doctor confirmed that the paralysis in Bill's arms and legs was a result of a spinal cord injury. He became Bill's primary doctor. Surgery was preformed to stabilized the injury. The first two-week Bill was transfer to an excellent rehab facility which had staff who worked with cp. He was making slow progress.

Then for ever reason he was transfer to another nursing home. The conditions were so gross it is beyond description. Bill had five post op.follow up appointments. They never took him to one. Finally he got someone to call his social worker. She went out to see Bill. He was in tremendous pain and nobody gave him his pain meds. So the social worker beeped the Doctor on her cell phone 911. Within 15 minutes he was at the nursing home to see Bill. That weekend I sent a volunteer to check on him since his needs were not being met by the nursing home staff. Everything seems stable to the volunteer. He was getting the pain medication.

Tuesday the social worker went to the nursing home to check to see if the home would provide an attendant on paratransit to his post-op appointment. They promise everything was set. While the social worker was there, Bill did not look good, he complained of chest pains. His roommate was just been coded. Thursday the social worker found out that Bill never made it to the doctor. I got a call Friday night about 10:00 from the Doctor saying that Bill died. The autopsy showed he died of "pneumonia due to cp" In other words he aspirated.

Bill would be alive today if he had the support he needed that would been there.

Martha Sheldon, M.S.W.

Let the Consumer Beware. . .

As a professional I worked with many excellect doctors and 95% of them and other health care workers care, are doing the best they can with the knowlege, skill and finacial resources they have.

BUT STILL WHAT HAPPEN WAS SO INSENSITIVE. Also, it could have been very dangerous.

Last April I had a bacofen pump implanted at Jackson Memorial Hospital, University of Miami Medical Center. The neurologist did the work up and the follow-up appointments. He was out of town when the testing and the surgery was done. A forth year pediactric neurologist resident was on my case. He was good. Except for neuro/ICU (the care was excellent in ICU) staying in Jackson was scarey and pretty hairy at times. I was discharge the day after I was out of ICU and four hour later I was in the ER because of chest pains. After surgery, the bacofen was set at 100 mics. Needless to say I couldn't get out of bed let alone stand. Before the 2nd discharge I insistant on a P.T. consult.

The therapist said DO NOT EVEN TRY TO TRANSFER TO YOUR WHEELCHAIR BY YOUR SELF. DO NOT STAY BY YOURSELF. YOU DO NOT ANY MUSCLE TONE TO FUNCTION.

Through Dr. Tolchin intervention the neurologist saw me. The med was adjusted. My tone came back and no more pain. The med was increased from 50 to 60 mics once. In November, I went in for a pump refill at the Day Hospital (where they give chemo) at Univ of Miami Hospital. As soon as the pump was refilled the feeling in my legs were different. Very loose.

I didn't think anything of it. The next two days I couldn't stand, walk, get out of bed. I went to see Joe. I couldn't walk. He told me to call the neurologist. I did. He call back and I explained what happened. He said the pump never fails and totally blew off my symptons. In three or four days I was ok.

Tuesday I went to see Dr. Tolchin. He got my records from UM. Dr. Tolchin told me that the meds was up to 70 mics. It had to be a mistake. The company rep was there also. They checked. Sure enough it was 70 mics. Then it became very clear the nurse who did the refill in November accidently typed 7 instead of 6.

This is only common sense. Last week was my last refill at the Day Hospital. The reading came back from the computer I had 2 mics in reserve and .03 in the unit. My total doage was 2.93 mics daily. So I asked the rep. Logically, and using common sense (giving that I don't know that much medically about the pump.) the pump should be filled before the last full daily dosage is gone.The rep said the pump should be refilled a week before the alarm due date.

The lesson I learned is that always ask for a copy of the printout and check it before and after the pump is refilled. The computer and the pump do not make mistakes. PEOPLE DO!