Friday, March 30, 2012
Oh, Say Can You Sleep?
Still not sleeping. The lack of sleep is getting old.
Still coughing. A lot. When I had pneumonia (two times), there came a point I was unable to cough. It was as if I had forgotten how. This is how my poor husband is frequently.
Yesterday, Camille, our other hospice nurse came to visit. Rob had taken off his oxygen for a few minutes before her arrival. Camille took his oxygen level...it was 75%. With his oxygen levels that low, Camille is afraid that Rob will become confused about his meds or fall. Often that is what happens when one does not get enough oxygen to one's brain. Because of his lack of oxygen, his heart has to work harder. After walking back into the room, Rob's heart rate was beating 120 beats per minute. After sitting down and having the oxygen on for about five minutes, his oxygen was up to 86% and his heartrate was down to 114 bpm.
On Monday, Rob weighed 153 (this is up from the previous week). Barb was a little concerned. She was worried that he might be retaining water. She told us that we needed to ring her immediately if his weight increased to 154. Well, yesterday, he weighed 155.6. It was decided that we would wait another day and see if he lost or gained any weight the following day. When we went to bed last night, Rob's ankles and feet were swollen. This morning when he weighed himself, he was 161. I rang Camille. She called Jane, the palliative care doc, and she prescribed a diuretic. This should help him lose that excess water.
Camille thought it prudent to make another visit today. Wearing oxygen, his oxygen level was at 77%. Clearly, he isn't getting enough.
His feet and ankles were huge when she came. His blood pressure was low yesterday and today. 108/58. Camille says that once we get the excess water out and back into his veins, his blood pressure will get higher. The new drugs should help a little with all the fluid in his lungs.
So, for now this is the plan...
If Rob's weight does not go up or down by Sunday, we call the on-call nurse and let him know.
We have graduated from two visits a week to three. Wahoo.
And last, but not least, Rob is now going to be sleeping in his very own hospital bed. It arrived today. He is especially excited about giving the kids rides on the bed. The head goes up and down as does the foot of the bed. There are even side-rails! I am quite excited about the four-inch blocks coming off our bed. I get to sleep at a 180 degree angle again!!!
Tuesday, March 27, 2012
Live Long & Prosper
What a week! Poor Rob. He is such a trooper. Can I just tell you how lame it is not to be able to breathe? In two words: it sucks.
Early Sunday morning, Rob woke up and started coughing. He couldn't stop coughing. He then couldn't breathe because he was coughing, then he couldn't catch his breath. Then he turned a lovely shade of purple. {I really do like the color; however, on a person, it is really not the best.} We did all that we were taught to do: more liquid drug, try to breathe slowly. Finally, after about 30 minutes of that, he calmed down. That was really a terrifying experience.
Rob's hospice nurse stopped by today. She took his oxygen level. It was at 78% {Rob swears it was 87%; however, he is doped up, so I hardly think that he is an expert on remembering things.} He started using oxygen whilst sleeping when he got pneumonia last month. Barb (nurse) told Rob that he needs to start wearing it all the time. If he is just sitting around not moving and decides to take a break, he may. His heart rate whilst resting is 100 bpm. When he moves from one side of the house to another (about 30 feet), it increases to about 120 bpm - this is like running up a hill for some of us. When I say that he moves, it is like a 99 year-old's steps. Slow and steady. He is EXHAUSTED all the time. Rob was wondering if this was because of the increase of his drugs. No. It is because his heart is having to work so much more than yours or mine. That is what lack of oxygen will do to you. Too bad we do not live in the age of Star Trek and they cannot run a medical tricorder over him and fix up his lungs. {We love Star Trek - in case you didn't know. Live long and prosper.}
Barb told me that I might want to think about working less and spending more time with Rob at home. My fantastic co-workers, Penny and Erin met with me today and we went over all of my job responsibilities and what they can do in my periodic absence. I spoke to my boss, Brent, and explained what was going on. He was 100% on-board with helping me do what I needed to do to support my family. I have such amazing friends that are so supportive and kind and caring.
Last summer Rob worked on some new sculptures and was able to get them fired. He was excited to get them back. When he feels better he is looking forward to finishing them.
I had the best conversation with a friend of mine. Amy stopped by my desk yesterday and said that over the weekend she thought a lot about me. I asked her why. She said it was because of the beautiful warm weather. Huh?? I wondered what that had to do with me. I asked. She said it was 'because of my stupid blog.' At this point I am trying to figure out what I wrote...
"What did I write?" I asked.
"Well, you wrote that you told Rob he cannot die until the weather is warm. The weather is warm now. You now need to tell him he cannot die until the winter because of how great you look in wool."
That was so funny! I asked her if I could share our conversation. She said yes and that she was happy it was snowing yesterday.
Warning: this is a little more information than you probably want to know...Barb ordered a commode (toilet) for Rob to keep in our room. I believe I mentioned that he has a bladder the size of a walnut. He is constantly getting up in the middle of the night either to urinate or to have a coughing attack. Because his oxygen level is so low, she really doesn't want him walking the ridiculously short distance from our bed to the bathroom. Rob has told the kids that when it is their week to clean the bathroom, they will be in charge of emptying his "bathroom." They didn't think that was funny. At all. I thought it was hilarious.
Early Sunday morning, Rob woke up and started coughing. He couldn't stop coughing. He then couldn't breathe because he was coughing, then he couldn't catch his breath. Then he turned a lovely shade of purple. {I really do like the color; however, on a person, it is really not the best.} We did all that we were taught to do: more liquid drug, try to breathe slowly. Finally, after about 30 minutes of that, he calmed down. That was really a terrifying experience.
Rob's hospice nurse stopped by today. She took his oxygen level. It was at 78% {Rob swears it was 87%; however, he is doped up, so I hardly think that he is an expert on remembering things.} He started using oxygen whilst sleeping when he got pneumonia last month. Barb (nurse) told Rob that he needs to start wearing it all the time. If he is just sitting around not moving and decides to take a break, he may. His heart rate whilst resting is 100 bpm. When he moves from one side of the house to another (about 30 feet), it increases to about 120 bpm - this is like running up a hill for some of us. When I say that he moves, it is like a 99 year-old's steps. Slow and steady. He is EXHAUSTED all the time. Rob was wondering if this was because of the increase of his drugs. No. It is because his heart is having to work so much more than yours or mine. That is what lack of oxygen will do to you. Too bad we do not live in the age of Star Trek and they cannot run a medical tricorder over him and fix up his lungs. {We love Star Trek - in case you didn't know. Live long and prosper.}
Barb told me that I might want to think about working less and spending more time with Rob at home. My fantastic co-workers, Penny and Erin met with me today and we went over all of my job responsibilities and what they can do in my periodic absence. I spoke to my boss, Brent, and explained what was going on. He was 100% on-board with helping me do what I needed to do to support my family. I have such amazing friends that are so supportive and kind and caring.
Last summer Rob worked on some new sculptures and was able to get them fired. He was excited to get them back. When he feels better he is looking forward to finishing them.
I had the best conversation with a friend of mine. Amy stopped by my desk yesterday and said that over the weekend she thought a lot about me. I asked her why. She said it was because of the beautiful warm weather. Huh?? I wondered what that had to do with me. I asked. She said it was 'because of my stupid blog.' At this point I am trying to figure out what I wrote...
"What did I write?" I asked.
"Well, you wrote that you told Rob he cannot die until the weather is warm. The weather is warm now. You now need to tell him he cannot die until the winter because of how great you look in wool."
That was so funny! I asked her if I could share our conversation. She said yes and that she was happy it was snowing yesterday.
Warning: this is a little more information than you probably want to know...Barb ordered a commode (toilet) for Rob to keep in our room. I believe I mentioned that he has a bladder the size of a walnut. He is constantly getting up in the middle of the night either to urinate or to have a coughing attack. Because his oxygen level is so low, she really doesn't want him walking the ridiculously short distance from our bed to the bathroom. Rob has told the kids that when it is their week to clean the bathroom, they will be in charge of emptying his "bathroom." They didn't think that was funny. At all. I thought it was hilarious.
Sunday, March 18, 2012
Health Update
Rob is feeling a bit better now.
A good indicator of his health is whether he does anything during the day. If he just sleeps, he is unwell. If he engages in his artwork or makes cookies: it is a good day.
Over the last few weeks he has worked on painting, chip carving, and he made cookies. Triple whammy! Wahoo.
I am glad that the Levaquin seemed to work. After completing the course of antibiotics, his breathing normalized a bit; however, it is not what it was prior to traveling to Florida. It seems to be especially bad while he is sleeping. He gets out of breath frequently. We take things slowly around our home.
His weight is steady. The only scale we own is the Wii Fit balance board. (Long story.) When he is feeling well, he does yoga (lately that has been almost daily). Before starting yoga, the program weighs him. So, long story short: Rob's weight has stayed pretty steady. This is a really good thing.
A good indicator of his health is whether he does anything during the day. If he just sleeps, he is unwell. If he engages in his artwork or makes cookies: it is a good day.
Over the last few weeks he has worked on painting, chip carving, and he made cookies. Triple whammy! Wahoo.
I am glad that the Levaquin seemed to work. After completing the course of antibiotics, his breathing normalized a bit; however, it is not what it was prior to traveling to Florida. It seems to be especially bad while he is sleeping. He gets out of breath frequently. We take things slowly around our home.
His weight is steady. The only scale we own is the Wii Fit balance board. (Long story.) When he is feeling well, he does yoga (lately that has been almost daily). Before starting yoga, the program weighs him. So, long story short: Rob's weight has stayed pretty steady. This is a really good thing.
Saturday, March 3, 2012
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
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
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