ARDS, new medical term.

Thank you to everyone that has been writing messages and calling me. Your support is overwhelming and appreciated. Bless you all for being so loving. Please remember to sign your posts. Sometimes I can't tell who is writing. I don't know who sent the poem yesterday, but thank you.

I keep learning new medical terms. Yesterday I spent some time talking to Dr. Kobitary, another pulmonologist. He said Ken has ARDS, acute respiratory distress syndrome, caused by bone marrow transplant BMT chemo drugs and the swine flu. He did a good job of explain Ken's lung scaring and rigidity. I asked him my daughter Tessa's question. Are you 100% sure he won't get better. He said that he is only 90% sure Ken won't get better, but 100% sure Ken won't get off the respirator. He said there is a small chance that we may be able to get him well enough to come home on the respirator. But people on the respirator only live for 6-12 months. He would pass when his heart gave out or his liver with all the drugs that we would have to be giving him. I am so thankful that Ken filled out the 5 wishes so that I know he doesn't want to be kept on machines once there is no hope of recovery. It somehow makes it easier, not really, but maybe. How's that for good English? Ken is the eloquent writer. Wish he could write us one last story to sum up how this is going from his point of view. I know he would be overwhelmed with emotion thanking everyone.

I spent the night at the hospital last night, sleeping on my air mattress in Ken's room. It was a quiet night. His nurse didn't wake me till after 5 this morning. But Ken is giving us a little excitement now. His pressures in his lungs keep going up. Actually, we think he is taking an extra breath now and then. It makes his respirator alarm go off. The alarm sounds like an old fashioned bicycle horn. Beep/beep. The nurses think Ken is again used to his sedation med levels, so they turned up his propovol. I haven't heard him honk in 10 min, so maybe that will help. They are trying to keep him comfortable at this stage. Yesterday, Dr. Kobitary adjusted Ken's respirator for a couple minutes to only breath 10 times per minute instead of the 30 times per minute that it is set on now. He wanted to see if Ken would try to breathe on his own. He didn't. Not one try. Of course, he is sedated, but the doc said he should have noticed the difference and taken a breath as a reflex. Kind of like how he bites down when the nurses try to clean his mouth.

I just sit here and look at him. His hair is started to grow back, especially on his face. I have shaved him a couple of times and will probably have to do it again today before the kids come. His beard is growing in very dark.

Yesterday was a busy day. I didn't cry as much as the day before. Course, that isn't saying much since I cried every minute the day before. I started the day with my dad coming to visit me. We had a couple of hours together before the rest of the family started to arrive. (Ken was just honking again; wish they would try the breathing thing again. I just don't want to believe there is no hope.) At 11 yesterday, Aunt Leah and Uncle Stan brought Ken's mom, Elaine, and Aunt Lavon up too see Ken. Toby and my mom, arrived with Ken's sister, Lisa. They had driven to Colorado Springs to pick up Lisa. We had a good visit. Linda Castor visited in the afternoon as well. She said a nice prayer for Ken. I'm thankful that Ken has a large room. We were all able to sit in his room for much of the day and visit. Toby drove back to Colorado Springs to take Lisa home. A lot of driving for Toby, but I know Lisa was grateful. At 5:15, I picked up Katy, Mark and little Norah. I only saw Norah for a few minutes before they took her off to put her to bed, but I enjoyed seeing her. Then I went back to the hospital and Ken's brother, Rick, arrived from Las Vegas. Elaine had actually stayed with Ken and Rick took her home last night. Then Stephanie arrived and we went out to dinner. Katy and Mark and Jeff and Sara joined us. We stayed late at Old Chicago's. I had a strawberry daiquiri for Ken. Those of you that don't know Ken as well as we do, that was his drink of choice. He loved his sweet tea, sweet classic coca-cola, and strawberry daiquiris. He was not afraid to order he frilly drink. I don't usually drink them, but it tasted good last night. It was good to have some time alone with the kids. They have been so supportive. We talked about arrangements and about how weird it was to be talking about arrangements when Ken hasn't yet passed. I love my kids. It will be great to have them all close by this week. They are holding me up. I hope I can give them the support they need as well. It is different for me. I have been sitting with Ken for weeks, living this and fearing this every moment. The kids haven't had as much time to process this. I hate that we have to. I can't believe we are at this point.

Today will be busy as well. I expect all the kids to arrive today; Anna is coming in from New York City and Tessa from Steamboat. I hope the roads are good for Tessa. Rick is coming back, my parents and Toby will be here. I expect and welcome any other visitors that want to stop by today for a chance to say good-bye to Ken. I respect all those that don't want to see him so quiet. He is after all, a loud laugher and we will miss hearing his laugh. We are at Presbyterian St. Lukes in room 3409, BMT North.

Bless everyone. Give us strength to get through this day. Bev