Florida and Distress

MORE TRAVEL: A few days after we returned from Texas, Rob said to me, "I think we should go to Florida." This meant: visit Rob's other out-of-state brother. Generally, as a rule, in the 18.5 years we have been married, if we go somewhere, ~90% of the time, it is me initiating said travel. Of course, this was a little surprising to me. I took him very seriously. (Also, I am not one to turn down traveling.)

Rob and I looked at dates we could travel without disrupting the kids' school too much. We decided to go over Spring Break in April. In the middle of January, I thought it prudent to have a conversation with Barb, Rob's hospice nurse, to find out what she thought about the dates we chose, before we locked in the dates. Barb told me that it would be better to travel sooner than later. He was feeling well enough then and you never know when things may change. Whenever a patient's medicine is changed whilst on hospice, that means things are progressing. Rob's medicine had been changed three times between December 1 and the middle of January, she thought that he might not be in a position to travel (i.e. too tired, too sick). She said that sometimes she is wrong. She loves it when she is wrong. However, she thought we should plan our trip earlier and that regardless of what happens in April, we would not have any regrets.

We decided to travel over President's Day weekend - the kids would miss two less days of school. When we told the kids that they would be taking a trip to see their cousins in Florida they were so excited! We let the kids' school teachers know and they responded favorably. Gabrielle's US History teacher called me and told me that if she keeps a daily journal of the things she does, what she liked, what she learned, and includes a few pictures that will be all she needs for his class to be caught up. Isn't that terrific? I love it when creativity is used.

We were fortunate to spend a week in February with Rich, Sharon, and their sweet children in Hollywood, Florida. It was so incredible. We went to the beach (one mile from their home) three or four times, we went canoeing in the mangroves, and visited an amazing Japanese garden. The best part was spending time with the Florida Finlinsons. The 80 degree weather was also a bonus. When we returned home it was 30 degrees. Blech.

HEALTH UPDATE: The last few nights we were there, I could hear Rob's breathing changing. He woke up several more times during the night with trouble breathing. We returned home on late Wednesday, February 22. Thursday morning he was clearly in distress. He couldn't catch his breath. His heart rate was 110 bpm resting. His oxygen levels were 85 and he had a fever. His hospice nurse came in and gave him a once-over and increased his meds. She said that if his fever got higher then we would start on an antibiotic. It was not a good day.

Friday, the 24th, he was worse. He couldn't walk five feet without being completely winded. He was panting, trying to get some air. His fever reached 102.1. I called the hospice nurse again. She arrived later that day and we had a good talk. Bottom line: more liquid drugs. No, he will not become a drug addict. When one cannot get enough air the body creates excess endorphins. Then, it is more difficult to breathe because of the anxiety created. The liquid magic helps to relax the muscles in the lungs, opens them to get air. Barb said the we need to stop trying to figure out WHAT is wrong (i.e. pneumonia) and focus on what we can DO to help him (i.e. liquid magic).

Sunday we went to church. Rob was able to stay for sacrament meeting. He was exhausted and I walked him out to the car so I could drive him home. He had to hold on to me for support. We walked at a glacial speed. It was like taking a stroll with a 90 year-old man. The best is when people say, "Wow, Rob! You look terrific!" Let me tell you. He did not look terrific. He looked awful. Why he thought he needed to go to church is beyond me; I would have stayed home.

Honestly, it was very frightening. I thought he was going to die last weekend. He looked terrible. He felt terrible. Distress is a word used by health care professionals when someone is in that state. That about sums it up: both he and I were in distress.

Thursday, March 1, was really the first day in a week that he felt a bit better. Yesterday we had a great visit with Jane, Rob's palliative care doctor. Turns out he had pneumonia. He still has it - it is lingering. He is still taking Levaquin (a heavy-duty antibiotic). He most likely picked something up in the plane to or from Florida. A plane is probably the worse place someone in an immuno compromised position could be - all that coughing, sneezing, blowing noses.

As always, we appreciate the love and support we receive from you.

xoxo