A Long Day

DISCLAMER: Details may too difficult for some with similar tragic experiences.

Some days start when I wake up to go to work and end when go to bed. Those are short days. This day started at 9:30pm PDT on July 21 and ended 12 noon on July 23.

“Kelly!” Is how it started. I ran into the bathroom and heard it before I saw it. The sound of thick fluid poring into the sink was something I had heard before but this was different. It was louder and thinker. Then I saw her. Blood was everywhere. “Air! Air!” she said. I ran to the machine and put it on. She signaled to crank it up. The blood still was coming. “911!, 911!” She said. Our greatest fear was becoming a reality. I called and waited. Helpless and powerless I waited. I thought I would try something we had talked about.

“Carol, your body is going to stop bleeding now. Your body is starting to heal it self. The paramedics are on the way and will be here soon. You’re going to make it to the hospital and your going to be ok.” I said this one more time and she started to drop down. I think she knew if she sat down she would never get back up again. She kept pushing me away. I held my and hand on her side and could feel and hear the blood in her lungs. Then she sat down on the toilet. As the firemen came down the hall way I could hear her whisper, “I love you.” All I could do was say, I love you too. Then her eyes rolled over and the firemen took over.

“Does Carol have a DNR?” one said to me. Shock set in. They where looking to me. I was trying to remember what we had talked about before if something like this happened. I couldn’t remember. What I did know is that Carol loves life and has never wanted to die. I said no we do not.

10pm.
I arrived at the hospital and was terrified they and ventilated her. I kept asking to see someone to tell them not to vent her. Finally the doc came out and started asking questions about why it was not good to vent. Then he said they had already done it. Her saturation levels when she arrived were 20%. The only option to keep her alive was to ventilate. If I wasn’t in shock before, I certainly went into it then. I asked about transplant and he said she was ineligible while she was on a vent.

Sometimes the best decision is no decision. So I said I would just ride out the night. At 4am she was transported to ICU. I stayed a few min and went home to rest. But when I got home I couldn’t sleep and went back at 7am. We got to meet the lung doctor at around 10am on Saturday. He seemed to be nice but was not experienced with CF. I found out later that when she came in, they didn’t believe she had CF due to her age. They thought it was an example of people thinking they have something but never been tested for it. Well, seems they got it wrong.

About an hour later her doctor from CHOC called ICU and asked to speak to me. He told me that the numbers on the Vent showed that Carol was doing most of her own breathing and that he didn’t see any problems when she came off on Sunday. I can’t begin to express my relief. So I stayed till 9pm on Saturday and tried to come home to sleep. I had a friend stay with me. I finally got in bed at 10 or 11pm. However, I just couldn’t sleep. And gave up at around 2am and got dressed and went back. I stayed with her through the rest of the night and into the morning.

11am Sunday
The lung doctor arrived and said they where ready to remove the vent. They took her off the drug which kept her under and she slowly began to come awake. He told her they where getting ready to remove the tube. He asked her if it didn’t work, does she want it put back in, she said yes. I asked a friend of Carol to come to the hospital. She knows sign language. Her efforts helped us understand that she was in pain from the tube. When we told her they where going to take it out she started to point and say, “They are going to kill me.” We helped her understand that she was not going to die when they took the tube out. It took a few times but I think we helped her.

Then the tube came out. She breathed on her own. And she cried. I cried. This very long day for me had finally ended. The nightmare was over and I finally woke up. I still didn’t get to bed till about midnight on Sunday. After 6 solid hours of sleep, I’m ready to face another day with living with someone with Cystic Fibrosis.

Kel, (AKA #1Fan)