December 11: Fell from ladder. Neighbors help him up after ½ hour and into car. Taken to Walnut Creek Kaiser Emergency by car and wheel chair. Given drugs for pain and taken to X-ray. Told there was no break just soft tissue injury and sent home.
December 15: Taken to Armstrong (our primary doctor) in a wheel chair in terrible pain. Purple bruises all over back and large lump on spine. Asked about lump sticking out of spine. Was told it was calcium build up which goes to the site of an injury. Asked about MRI - TOLD HE DID NOT NEED ONE. Asked for a referral to an orthopedic surgeon. TOLD WE DID NOT NEED ONE since it was soft tissue injury. Sent home with more powerful drugs for pain. Also set up for physical Therapy.
December 20: Telephone call with Armstrong. Advised him that my father was in extreme pain and that he needed help. Was told "There is nothing we can do for your father - put him on the phone".
January 13: Still in severe pain. Starts physical therapy. Worse pain after therapy.
January 20 – Back to Armstrong; Still in severe pain. Still cannot lie down, has slept in chair since accident. We are referred to a Rheumatologist. Told to continue with pain medicine therapy and recommended for acupuncture. Infection in his back where the lump is. Given medicine for infection on his back and told to get a donut pillow to keep pressure off the sore.
Therapy and acupuncture continues on Fridays. Pain still severe. Still taking drugs.
February 11: Back to Armstrong. Still in pain. Still cannot lie down, must sleep in chair. Now has a sore on his back where the lump is. Told to use donut to keep sore from getting worse. Still does not want to do an MRI or refer us to an orthopedist despite repeated requests.
February 25: Sees rheumatologist Wiskocil in Walnut Creek. States he says he suffers from ankylosin spondolitis and is “shit out of luck”. Will have to live with what he’s got. Tells us that surgery is definitely not an option with his condition. Does an impression of Ed Sullivan who also had Ankylosin spondolitis. Says he will tell the spine doctor about this and ask about a brace, although he doesn’t think that is an alternative. Again says surgery is not an option. Will not refer us to an orthopedic surgeon, but only a spine doctor for a brace if possible.
Continued with therapy and acupuncture.
March 17: Back to Armstrong and asked second opinion. Again asked for an MRI. Told again that it wasn’t necessary. Just soft tissue injury. Says he will refer us to another rheumatologist. Before we can do that we get a call from Dr. Wies, a spine doctor in Martinez.
March 26: Dr. Wies wants another set of x-rays taken because the ones we have are so bad he can’t read them. Should have been done over. Dr. Wies says Bob has a break in the spine. This is the first time we were told that he had any kind of break. He says it looks like it is healing, but we have to have a CT Scan and a pulmonary function test and then we can discuss options. No restrictions on his normal activity. Tests are scheduled for the following month.
April 5: Back spasms start.
Monday April 7: Tries to go to the bathroom, has back spasms and he falls to the floor. Paramedics called and he is taken to Kaiser Walnut Creek Emergency. They give him drugs to try and get the pain under control. Then the emergency doctor says this is serious and he should go to Oakland where the spine clinic is and where he can get a CT Scan right away. The ambulance comes and takes him away.
I arrive at Kaiser Oakland and go to the Orthopedic Department. They have no record of him and it takes at least an hour before they tell me he has been admitted. We go up to his room which is a three bed ward. He is in severe pain and they put him on a morphine drip. A little later Nancy the PA comes in and asks why is he here, they didn’t know anything about him coming and he just can’t come into the hospital and expect to get a scan right away. A Baines came up and talked to us and scheduled a CT Scan, but we had to wait another day before we got it. Since Dr. Baines was going to a conference Dr. Burnham took over his case. They tried to do an MRI, but Bob cannot fit in the machine.
When Dr. Burnham saw the scan he talked to us and said in the case of a break like his and with his condition surgery was absolutely necessary. I told him what Wiskocil had said about surgery. and he calls Wiskocel from the hospital room and chastises him. Tells him that surgery is always required in a case like this. Wiskocil agrees.
April 8: Told he would go into surgery between 5pm and 7pm. Dr. Burnham came down to tell us that the men who put the pins in his head and legs were delayed. Surgery finally started at 12 midnight. He came out of surgery at 5 AM.
April 9: Was doing well. They fitted him for a back brace.
April 10: He continued to improve and Sue the physical therapist said they would start getting him up and walking and he might be home by the end of the following week.
Dr. Burnham tells us he has a hole in the bone and they have to go in from the front to replace the bone with a rib. There is a lot of discussion about whether it should be done right away, but the decision is made by the DOCTOR to go ahead. He is supposed to have an MRI, but they cannot get him into the machine. He goes into surgery at 8:30am in the morning. At 4 PM they tell us that a problem occurred during the surgery and they lost the connection to his legs. He is taken for a CT Scan and they discover fluid blockage in his spinal cord. He is taken back into surgery and finally is in recovery at 10 PM. The next day he is able to feel his toes and legs, but not move them.
Dr. Burnham tells me that he had a vascular accident and that there is only a 10-15% chance of his walking again and that he may not make it at all. Gives me a paper on Anterior Cord Syndrome which is the injury that he has suffered.
Continues to fight and I am there from early morning to late night. Care in ICU is indifferent. Buzzers go off and no one pays attention. I have to constantly ask the nurses to help him.
Taken to seventh floor west where nursing staff is excellent. First time up for Physical Therapy. He is sitting in a chair and the technician from nuclear medicine comes down and pokes for blood for one hour. Pressure falls and everybody panics. The PA orders every test in the book. Sue the physical therapist says this is common in patients who have been in bed a long time. They take him for all kinds of tests and then at 4:30 AM they move him to a three bed ward on the 8th floor so they can monitor his heart. His heart is alright so they move him to 7th floor east.
Doctor orders dressing changed every day and physical therapy every day. Over the weekend nothing is done. When I leave him in the evening he is settled and when I come in the morning he is all upset. The morphine is making him hallucinate and he pulls out all his IV’s, there is blood all over.
After going up to administration and complaining, care improves. They suggest I get a private duty nurse for the nights when I’m not there. I hire a private duty nurse to be there in the evenings. On Tuesday April 29th, Bob is taken by ambulance to Kaiser Vallejo Rehabilitation Hospital. Dr. Chaudry performs a neurological test. It is determined that he has a spinal cord injury at the T6 level, which is everything below the waist.
Monday June 30: Home care worker sent for training. Social worker told Hospice Home Care we wanted 24 hour care without talking to us. When Hospice Home Care called us I said I only wanted 4-8 hours (this is all we can afford). The home care worker they sent only did 24 hour care, so I had to train the worker who came the next day. Hospice commented that they thought the Social Worker was not easy to work with. That evening when transferring, nurses aide did not hold on to his back. He went back and hit his head on the side of the sink. Had to have tape stitches.
Monday July 1: Talk to Dr. Chaudry about continued therapy. Says it is up to Bob now. He has to do for himself.
Bob comes home with no Bathroom Chair or Power Wheelchair. They have to be special ordered and designed, but he was at Vallejo for 2 months, couldn’t they have done it in that time.
Tuesday July 2: Caregiver comes and must be trained. Therapist comes and tells us that every day without therapy will lose mobility.
Tuesday July 8: Kaiser Occupational Therapist comes with man to measure wheelchair. She does house evaluation. She can’t understand why they didn’t do this before he came home (neither can I). They bring in Bathroom Chair which is so large it won’t fit in our house. So we refuse it. We have now been without a bathroom chair since he came home. He has to have his bowel movement in bed, which is difficult and degrading.
Thursday July 10: Home Occupational therapist comes and is upset that he does not have a bathroom chair.
July 14: Appointment in Oakland at 1:45 PM. We arrive early for X-rays. We are there until 5 PM.
July 15: Bathroom Chair finally arrives. Unusable because it has wheels on back and front. Front wheels don’t lock, back wheel lock is broken. Seat is too soft and Bob sticks.
July 18: Home OT comes and calls about power wheelchair. Chair he has is wrong. Tells us that Charlotte the OT for Kaiser that came to do the house evaluation has put a hold on the power chair. She says he can get in and out of rooms with chair he has. Bob cannot get into bathroom by himself. Chair has to be lifted. Cannot get into den without hitting wall. Is not able to do pressure relief in this chair. Shoulders are hurting. I call Kaiser Vallejo and they tell me the chair has been put on hold. I ask for the name of Charlotte’s boss, call and explain to her. She calls me back in an hour, talks to our OT and then tells me she will order the chair. It will take 6 weeks from the time it is ordered. This is very distressing as life is much harder for all of us without the power chair.
Running out of prescriptions, but am unable to get them filled. I finally go into the pharmacy and they tell me the Vallejo Doctor should have called the Primary to get the refills. This has not been done. They finally take pity on me and say they will take care of it, but it will take several days. Monday July 21, still no prescriptions.
July 22: Technician came to look at bathroom chair and took it away. Will try to get another one right away. Meanwhile, still has to have his bowel movements in bed.
July 24: Still no bathroom chair or prescriptions. Vallejo says it’s the responsibility of the primary Doctor. Primary Doctor not approving. Finally after going to Member Services I get prescriptions at Shadelands.
July 29: Appointment with Dr. Korn (new primary). 45 minutes late. Goes over prescriptions, but tells us he has no experience with these cases. We ask about Lovenox (whether he still has to take it) and he says he has to check with other Doctor and will let us know. Have several questions, but he tells us he has no more time to give us and moves on.
August 6: Still no bathroom chair and haven’t heard from Doctor on Lovenox. Our home physical therapist call on the bathroom chair. Tries to reach Charlotte with no success so goes to her boss. Chair will be delivered this afternoon. Chair delivered, again the wrong one-no retractable arms. Calls again and told they will deliver correct one this evening. Arrives at 7:30 PM. Chair is way to light. I finally give up and order one myself.
August 8: Developed a pressure sore. It broke open over the weekend.
August 11: Nurse comes and says he has a stage 2 pressure sore due to the fact that he has the wrong chair. Unable to do the pressure releases. Calls on chair. Still 4-5 weeks before we will get it. Unable to shower since he got home because he has no way to get into the bathroom. Nurse ordered a special cushion. Said we couldn’t wait that long for chair. We need cushion ASAP. Same day if possible.
August 12: Still no cushion.
September 23: We finally get the power wheelchair.
October 2: Has to have a Bone Scan at Kaiser Walnut Creek. They schedule the shot for 10:15 am and the scan for 1 PM. They take him in at 1:30 and the transfer team comes in at 2:00 PM They transfer him to the table and then say they are off at 2:30 and must leave at 2:15 to do paper work. When he is done with the scan he lays on the hard table because no one knows how to transfer him back to the chair. At 4:15 PM I go in to ask what the problem is. He is in agony on the table. The technician is very upset because she can’t get anybody that knows how to use the Hoyer Lift. Finally Bob’s caregiver and I show them how to use the Hoyer Lift and we get Bob back in the chair. We finally get out of there at 5 PM.