It's been some time since I last wrote about Ken. His situation has had so many ups and downs it is hard to remember it all. But this morning as I woke up I thought I just might document a little of what has been happening.
As many of you know Ken had a long hospital stay from December through the beginning of March during which he suffered from aspirational pneumonia. That resulted in a feeding tube and a tracheostomy and losing his voice. He went to Bryn Mawr Rehab for almost two months. He finally came home on March 6. For the next three months he got better and better at home with an amazing array of home health aids and physical and speech therapists. He was able to talk again and walk again and continue writing his memoirs. He had resumed his Chinese language classes, started hosting the Japanese Chorus again, and finalized a lot of the copy for his memoire. Then on May 22 he fell in our family room. He had been working on his computer and was walking with the computer and two notebooks. He somehow lost his balance and fell on his tail bone. I was in the kitchen and immediately ran to help him get up. Yumiko too heard the commotion and ran downstairs to help.
Falls are not good, but Ken sort of just shook it off and was O.K. The next day we had the Japanese chorus group here and all was well. But then on Sunday the pain set in. And just continued to get worse and worse. We called his wonderful doctor - Mathew Rusk and he ordered an x-ray. We then went into Philadelphia to Dr. Rusk's office to review the x-ray which didn't show much of anything new - just what looked like old injuries. Dr. Rusk prescribed Tylenol three and time to heal. For the next week or so the pain just continued to get worse. Ken couldn't walk and couldn't find any good position. Finally on June 12 we went back to see Dr. Rusk and he immediately put Ken into the Emergency Room at the University of Pennsylvania Hospital. By this time Ken was delirious with the pain. A cat scan revealed that Ken actually had three new fractures - two pelvic and one spinal. The docs gave him strong medication - Morphine and Oxycodone and Seroquel and then admitted him to the acute care floor of the hospital. Over the next two weeks Ken was in and out of delirium - causing him to flail about and pull at all his tubes and iv's. He dislodged his feeding tube. The feeding tube had to be removed and replaced with a G/J tube. This new thinner tube went all the way into his intestine, but somehow still did not work well as it was leaking (and continues to leak to this day.) During all of this Ken could not tolerate the new feeding formula that was being put through the feeding tube causing all kinds of commotion in his digestive tract. Through all of this he did regain his consciousness enough so that he could be transferred to Bryn Mawr Rehab.
When I left him that first night at Bryn Mawr Rehab, he was comfortable, lucid, and so happy to be out of the hospital and in a good place that he knew would help him recuperate. He could talk and squeezed my hand and I felt so relieved as I left for home. But then overnight, he became delirious again - maybe it was the medicine - more Serequel - but he became combative and had to be put back into restraints and mitts and zipped into a totally enclosed cloth bed. I thought all was O.K. and so did not go back to the rehab until 4:00 the next afternoon. By that time, everyone at the rehab was concerned. His feeding tube was leaking badly. I said I would return the next morning at 8:30 for the doctor's rounds and see if he should go back to the hospital to fix the tube. Yumiko and I got to the hospital before 8:30 and found Ken with mitts on again, tied in restraints and fully enclosed in the cloth bed. He was totally disoriented, in pain and very unhappy. The rehab called the ambulance and soon Ken was whisked off to the emergency room at Paoli Hospital with Yumiko and me driving there as quickly as we could.
Paoli Hospital was a beautiful serene place. The staff there were very concerned about Ken's breathing as well as the leaking feeding tube and the diarrhea. At the end of the day he was admitted into the ICU. Again, he was placed in restraints and put on propofol - a narcotic drug to kill pain and help him sleep. In order to stop the diarrhea, they stopped the feeding tube. After about two days in the ICU, Ken did not get any better. The feeding tube continued to leak bile from his stomach. The diarrhea finally stopped, and the docs turned off the pain medicines and Ken became extremely agitated. He just struggled and struggled against the restraints and the mitts, so much so that he had trouble breathing. I just asked them to please loosen the restraints and give him a little sedative, but it took forever for the docs to give the order. Then one of the docs said they were worried that he might stop breathing though all the agitation and asked me if they could put Ken back on a ventilator. Oh, I didn't want to make that decision, but I felt I had no alternative, so I said yes.
There he was - totally drugged with a ventilator down his throat and a leaky feeding tube. The next day the docs said they were concerned about the ventilator being in place too long and recommended that they put in a permanent tracheotomy tube. That was it for me. He had already had a trach the last time and we hated it. I talked to Ken in his delirium and told him I just wanted to bring him home. He agreed. The docs warned if they took out the ventilator he could die right then and there. We said we would take our chances. In the meantime, the nurses recommended that I talk with Hospice. A very caring group of people talked to Yumiko and me about what we should expect when we brought Ken home. They gave us some pamphlets to read. Basically said, keep him comfortable. Turn off all the machines and meds and let him go. So I had to make that decision. Ugh. I called all my siblings in tears, then called Ken's sister and nephew and really just wanted everyone's permission. Ken is my life, my treasure and a treasure to Yumiko, his family, and to so many. The decision to turn everything off was totally unreal. Ken has suffered mightily but still wants to live mightily.
The next morning, the docs excused us from Ken's room and took out the ventilator. And voila - he breathed on his own - no problem what-so-ever. Then about two hours later the ambulance arrived to bring him home. Yumiko and I went to the hospital pharmacy to pick up our supply of morphine and then hurried on home to meet the ambulance. When we got home, a wonderful hospice nurse was here to greet us and help Ken get settled in. I explained to her through tears the whole situation. She then examined Ken. She said, "This is not a dying man." We can turn on the feeding tube with your food at half dilution and give him his Parkinson's meds so he can move again. All of a sudden, life came back. I know many, many people would think twice about turning everything back on again. But my heart was never in it. I know I would have regretted terribly for my life if I had let Ken slip away on my terms. This is his life and he needs to figure out when it is time for him to go on his time table.
It has now been a week since he came home. It is not easy at all. These are the longest days. Friends have been so wonderful. My dearest friend Carol Scafuro flew down from Vermont and cooked the most marvelous breakfasts, lunches and dinners every single day for me and Yumiko and the caregivers and all the friends that stopped by. She cut and arranged flowers, cleaned the refrigerator, did the wash, did the grocery shopping, bought Yumiko birthday presents from me and Ken, filled the freezer with meals and held all of our hands.
Ken has been in and out. He did wake up the other day and was completely lucid. I told him the whole story of the last month - of which he remembers NOTHING! He cried knowing how close he came to dying. For the most part he is comfortable. All the nurses have been more than wonderful. And we've hired round the clock home health aids who are beyond the beyond. Caring, smart, compassionate.
This week while Carol was here and friends came for dinner and the home health aids were here and Ken was sleeping peacefully, I thought - WOW - life is so rich and full and hard and beautiful. I know I will make it through this. And I know Yumiko will make it too. And Ken just may get better. He walked today - with a walker - just a few steps, but he walked. He is one totally determined man.
This will be a really long haul, but I'm up for the haul as long as I can get outside and take a few pictures every day. It keeps me in touch with my soul and life and reality.
Thank you all for listening and loving us so much.