Update - from Home

Greetings,

It's been a busy week. But we are finishing on a positive note.

We started hospice last week. A bed, commode, bed table & lift chair were all delivered. Also any meds he might need to manage his symptoms were prescribed along with a DNR order signed by his primary.

Monday was a busy day with a nurse, the bereavement coordinator & a chaplain coming to the house. The nurse got his basic vitals & expectations for them & us. Mike the bereavement coordinator came & talked to us about the process & how we could reach out to him at any time. Kathryn the chaplain was a challenge & made us think about our beliefs. We were both emotionally drained after this day.

Tuesday morning the social workers came & talked to us. They talked about expectations & answered any questions we had. We had to resign the paperwork for the DNR because the doctor we had chosen hadn't seen him in years & didn't feel comfortable signing the DNR. So we had to go back to the doctor that missed his cancer a few times in order to get a DNR. We finished the day on a positive note. I tried to drain his left lung & only about 20-25 ml of fluid came out & it was clear! This is the color it's supposed to be not the amber color that had been drained from his lung since January 24th. Not the 1,000 plus ml we had been draining but a minimal amount. We started to think a bit optimisticallly.

Wednesday was emotional. I had to go to the funeral home & plan his funeral. We picked everything out that we could except the catering & what the service was going to include. I was able to get thru this without breaking down emotionally. I had to choke back my tears when we walked into the casket room. I chose a single casket spray with all the ribbons a family member should have - father, son, grandfather, uncle, brother, & husband. I was so glad when we were done so we could leave. I shed my tears when I got home as that was something that I didn't want to do but needed to do so that I wasn't doing it when I in emotional turmoil. I started him a Selenium protocol today. Dr. Chris Barr said in his book about Selenium from choosetobehealthy.com He takes 1200 mcg daily. We are not giving up, we're going to continue to fight this, just a different way.

Thursday the hospice nurse was here again. She changed out the dressing of his PICC line & answered any questions we had. She called in a refill of a prescription patch he has to help with nausea & vomiting. The clinic was supposed to have it called in by 5, they didn't. I tried to drain his left lung again tonight. I only got about 10 ml & once again it was clear. He was off his oxygen for a short time tonight. His oxygen saturation vascillated between 90 & 95, occasionally dipping below 90 but coming right back up again. And he felt good, he wasn't short of breath. He was even walking around the house without it & maintaining 90% plus saturation. Out in NC, off oxygen it was almost a consistent high 80s saturation. Out there he was consistenly short of breath in the hotel room & couldn't sleep at night because of this.

The early morning hours of Friday were rough. He woke me up early.....5:44 am asking me what time it was. I said.....early....he asked how early.....I said 5:44 am, go back to sleep. Less than an hour later he was asking for pain pills. I told him if the sun isn't shining yet....its early, don't ask for the time. He got a sponge bath this morning. He was able to lift his legs up on a chair to wash & dry them off. He did it automatically without thinking. I said wow.....look at you. He looked at me & then realized what he had done & got a big smile on his face. He said he didn't even think about what he was doing.....just doing what he had always done. He was able to walk out to his shop with his brother today. He hasn't been out there since before Thanksgiving. He had trouble getting up the back steps (but I do too since there isn't a handrail) but he made it up.

I told him tonight he has to continue fighting & not give up. We believe prayers are being answered & maybe even a miracle in the process.

Continue to pray for him & our family. We're not giving up.

Until next time,

Lori