Our Story, how it began
My husband Marty worked up to the day before he went into the hospital. He was climbing ladders lighting a film shoot. He had built our film studio from the ground up and it had become a cornerstone of the industry in our community.
In July 2012 my husband, Marty, went in for an "over night" procedure. It resulted in a perforated bowel. He spent 49 days in Stanford's ICU.The damage from the sepsis did damage to his lungs, so they did a tracheotomy and placed him on a ventilator. It came as a shock, out of left field. Nothing we were expecting. It was terrifying and surreal. Months of long nights sleeping with my cell phone, renting rooms and sleeping on couches and chairs. Every night was spent in prayer and despair. Fighting the fear and praying for guidance and strength, my advice? Find your core strength, (it is there whether you know it or not) and spiritual friends, reach out and lean on them. Ask for prayers... ask for help.
When his medicare days were up they shipped him off to a "Long term acute care rehab" facility. It was described as a specialty hospital where they could "wean him" off the vent. No guarantees.It was a 3 hour drive from home. I was one of the lucky ones, a friend loaned me her house to stay in and I had a cousin and his family who were close by. My husband's children came and spent days, nights on end. He had a few weeks when he began to gain strength and do a little better. Then he got pneumonia a few times and had 3 trips to a nearby ICU. Blood transfusions and days in isolation. He went to the facility to get weaned off the vent, but things weren't really getting much better.
After nearly 3 months in the rehab facility, they no longer felt there was anything that they could do for him and so we brought him home. Before we left the staff taught me how to suction him, change his trach and do all the things that I might need to do . It was a fearful time, however the only other option was to have him go to a sub-acute which I knew would be his end. If he were going through "end of life" at least he would do it at home. And I also knew he might just get better.
He was in a diaper, on a rectal tube and a catheter. He could barely stand on his own.
After 6 months of hospitalization he was sleep deprived, they had him on morphine, which he was weaned off of before we brought him home. I knew the morphine was taking his life force.
Palliative care versus hospice
Before our discharge there were many discussions about our options at home. The first one was hospice care..."end of life" to make him comfortable. The second lesser known option was "Palliative care"
The difference is that, although, with hospice the patient and family get a huge amount of help and support, it also meant there was no option to call 911 in an emergency. They might want him off the feeding tube and of the ventilator. They would be helping us facilitate his "end of life".
However Marty was clear, he intended to live.
Palliative care also specializes in comfort for the patient as well as support for the family. They would provide a physical therapist, speech therapist and occupational therapist. In our case the Palliative care team also provided a physician who would come to the home.
We chose Palliative care. It has proved for us the right decision for us. Marty came home and in two days was out of a diaper, catheter and rectal tube. He was getting up with a walker and using a commode. within 3 days we took him outside.
Home provided the sleep and environment he needed for healing. I knew my husband, if he intended to live and had the support and environment to support that then he would live. Despite the doctors clear words that he would not recover, although they "hoped they were wrong".
More to come, stay tuned
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