Robin is Home - in Hospice Again -- 05-26-2012

 
My last message was on Tuesday, 5-22-12, when Robin finally returned home from the hospital. Robin slept through the night that night. We have been through quite a roller coaster ride since that night. It has been surprising how much energy that the emotions and the stress have taken. When compounded by the lack of sleep, I think we have all felt total exhaustion.

I have had great difficulty finding an opportunity to write and send an update. Robin had a fairly constant stream of visitors this week, even though she has been unable to talk most of the time. Sometimes, when there are no visitors, Robin would awaken and want to talk. I have taken advantage of these moments, knowing there will be fewer each day. When there are no visitors and Robin is “sleeping,” I have tried to catch a few winks. In a nutshell, that is how the past few days have gone.

Our good friend from graduate school, Terry, arrived on Tuesday for a visit that was planned weeks before Robin got sick. He came directly to the hospital, visited through the afternoon, and helped us move Robin back home that night. The hospital loaded Robin up pretty well with pain medications for the ride home, so she slept through the night. A nurse from hospice came to complete the “intake” paperwork, admitting Robin back into the program, so I was fairly busy that night answering questions and signing papers. After the nurse and our visitors left, I slept in the living room with Robin, sitting up on the couch, but I did not rest well. Terry stayed with us in the living room that night, too.

Earlier in the week, I had planned to go to work on Wednesday, which would leave Robin with her mother, Johnnie, and her attendant, Connie. However, Robin’s hospice nurse said she was coming to evaluate Robin’s condition and determine what we needed to provide her comfort. So I decided that I needed to stay home to understand how to handle her medications and take care of her wounds. After the nurse left, I took a nap from about noon to 2:00 PM. When I got up, I found that Robin had awakened shortly before me, and she was talking and more alert than she ever was in the hospital. Although her conversation was fairly lucid, she clearly had some major deficits from her illness. Mom told me that when she first awakened, Robin asked her to get me so she could get up and walk. When they told Robin that I was asleep, she said, “Get Terry. He’ll help me!” Clearly, she knew through the fog of the previous day, that Terry was visiting and that he would help her, but she did not know that she had not walked for several years. After I got up, she confided to me that she did not recognize where she was; the house; the bed in which she spent the last few years; even the city or the year. It didn’t matter, though. Her speech was very slow, and sometimes she lost her train of thought, but it was great to be able to talk with her!

The “bath lady” from hospice came very late in the afternoon, but I had no idea the bath would be so painful for Robin. Due to all the movement, Robin required major help for her pain. Soon after medication, Robin fell into a deep sleep for the rest of the night.

Thursday morning, Terry left and I went to work. But before I left for work, Robin made me promise that she would not have to take another bath. When the hospice bath lady arrived early in the morning, Mom explained that Robin could not tolerate another bath, so Connie helped her clean and change Robin, but spared Robin the bath. Robin was awake most of the day. She continued to talk fairly well, but she was still very confused. After eating dinner, Robin went to sleep for a while.

Robin’s Mom was going to sleep in the room with Robin Thursday night, so she made up the couch and laid down. But at about 10 PM, as I was about to go to bed, Robin woke up and wanted to talk, so I stayed up with her. We stayed up and talked until 3:30 AM on Friday. Since it was just the two of us (maybe for the first time in days), I talked to Robin about how sick she was, and that we chose to take her home to make her comfortable because the alternative was surgery. Robin understood that she came home to die, and she told me that she appreciated my candor. The night’s discussion vacillated between tears and laughter. We discussed things she wanted me to do, music that she wanted (and did NOT want) at her funeral, people I needed to contact, where she wanted to be interred (in North Carolina, where her father is buried), etc. It was a long, very personal talk. I told Robin that the last time we stayed up and talked all night like this was many years ago while we were dating!

Since that night, (Friday, May 25th through Monday, May 28th), each day has been very similar. John, Johnnie, and I have been working together to keep Robin as comfortable as possible. The tasks required to take care of Robin are well beyond what I ever imagined I would need to do for her, and far beyond what I could put in this blog. Suffice it to say that I am glad that John and Johnnie are here with me. When Robin has waves of lucidity, we are able to feed her a bit and talk to her. I thought she might forget our long discussion from Thursday night, but she has not. Robin’s pain appears to be increasing as the infections worsen, and that means we must give her medications to alleviate the pain. Currently, it seems that the dosage required to manage the pain also puts her to sleep. Thus, our opportunities to talk to Robin are shorter than they were earlier in the week.

As I said earlier, Robin had a steady stream of welcome visitors earlier in the week, but (fortunately) the stream has reduced to a trickle of very close friends that we call “Our Texas Family.” I think folks have realized that that we needed a break, and have backed off. I thought about opening a “Care Page” for Robin so that folks can share their stories and thoughts with us (and everyone else) in a less-intrusive way. I will send information as soon as I figure it out. If you have suggestions, email me. (SOON)

That’s it for now. I still have so many things to do, including catching up on sleep.

As we usually do, we thank you all for your love, prayers, support. It is a great comfort to us to know you are there, even when we are separated by great distances. The signs of your continuing love and encouragement are helping us to get through this difficult time.

Please pray for God’s mercy for Robin and for strength for us, who are caring for her.

Love,
                  --- Larry, Robin, John & Johnnie

Robin's Hospital Stay and Anniversary -- 05-15-12 to 5-22-12

The following is a collection of emails, listed in chronological order, about the last hospitalization of Robin:

Heads-Up: Robin is in the Hospital --- 05-15-2012

Just a quick note to request prayers for Robin. She is in Memorial SE. Robin finished her last round of IV antibiotics on Friday, 5/11/2012, and became ill again on Monday. Hospice nurse came on Monday night and suggested talking to Robin's physician. After I finally got to talk to her doctor, I was told to take Robin to the emergency room, where I have been for the past eight hours!!! They will move her to ICU when her blood pressure improves.

Please pray for Robin. These UTIs have been getting more frequent and more drug-resistant. The doctors are saying that they are running out of drugs that are effective. They seem to be throwing everything at her tonight. She has already received three different IV antibiotics, an IV to raise her blood pressure, and they are planning a transfusion.

Thank you, in advance, for your prayers and thoughts,

Larry

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Robin Update: 36th Anniversary in ICU --- 05-16-2012

I am sorry that I cannot spend more time to provide a thorough report on Robin's status, and I wish the report was better.

Robin was moved from the Emergency Room to the Intensive Care Unit (ICU) at Memorial SE about 11:30 on Tuesday night. At the time, her state was what I call, "barely responsive." She was not unconscious (she never lost consciousness, really), but she was very confused, calling for her mother and yelling, "Help Me!" in short bursts. She could not say what she needed, and, although she would open her eyes when we spoke to her, she did not respond to questions.

I stayed with Robin overnight, but I got little sleep. In the morning, after a required break (they close ICU visitation from 6-8 AM and PM), I returned to stay throughout Wednesday.

Robin's treatment includes three different "Big-Gun" antibiotics, medicine to raise her blood pressure, LOTS of IV liquids, and two blood transfusions. Robin steadily improved all night and all morning on Wednesday. At the height of the improvement, she was able to converse a bit, and she knew that it was our 36th wedding anniversary. However, starting about 11:00 AM or so, she started to regress, eventually getting back to the state of barely responsive. Robin's mother arrivwed from North Carolina about 2:30. Robin recognized her and said, "Momma," but not much more.

At 6:00 PM, we left for another ICU closure, and we had dinner. When we returned from dinner, Robin had improved again, but was only about halfway to where she was that morning. She spoke a little, although some did not make sense, and she drifted into sleeplike state while talking.

I came home to write this and to get some sleep. Mom and Connie (Robin's companion/attendant) will be with Robin in the morning on Thursday. I plan to rejoin them after noon. I'll provide another update sometime tomorrow.

Thanks for the prayers and support. PLEASE keep up the good work.

Robin has always known and trusted in God's goodness. Join us in thanking Him for the improvements so far, and ask God that His will, not ours, be done.

Love to all of you,

Larry & Robin

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Robin Update: Second Day in ICU --- 05-17-2012

There has been no significant change in Robin's condition since yesterday. She is still "barely responsive." She has moments when she will speak a few words or open her eyes, but she appears to be sleeping most of the time. Robin has stabilized enough that her doctor ordered her to be moved from ICU to IMCU (Intermediate Medical Care Unit; a step above ICU), but she still experiences spikes in temperature (fever) and high sensitivity.

I'll provide another update sometime tomorrow.

Thanks to everyone who has sent messages of support. I am sorry that I cannot reply to each one individually, but let me assure you that I do read them; I even read some to Robin, even though she is "out-of-it."

Please keep up the prayers and support.

Love to all of you,

Larry & Robin

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Robin Update - Moved to a Room - 05-19-12

There has been little change in Robin’s condition since I last wrote. She has brief intervals of lucidity, but within minutes, she drifts back into sleep or delirium. She has refused to eat more than a bite or two of food, and we have to check to make sure she swallows.

Yesterday, Fr. James came and gave Robin the Sacrament of the Sick. When he arrived, she opened her eyes and was more awake than I had seen that day. However, she quickly drifted off to sleep as soon as he left. Robin had several other visitors, but she did not really react much to their presence.

Alexis stayed with Robin Friday night. She told me that Robin slept deeply through the night, and the nurses had great difficulty rousing her to take her medicines. This morning, they took Robin off of the IV saline she was getting because they believe she is building fluid in her lungs.

The doctor stopped by just a minute ago and said that Robin will need a couple more units of blood. He said that the additional blood might perk her up. (They tried to give her blood yesterday, but had to stop it because her temperature spiked). He said Robin did not have fluid in her lungs, and he talked to us about transferring Robin to an intermediate level hospital where she can continue the IV antibiotics. We talked about it and decided to see how Robin is doing tomorrow before making any decisions.

There is not much else to report. I am very discouraged by the lack of improvement over the last four days. In the past, it never took this long for her to start showing good progress. However, the doctor was more positive, and thought it would just take longer because she had more than one bug.

Please continue to pray for Robin and for all of us as we try to walk this path that is before us.

I will send another message if there is any significant change.

--- Larry, Robin, John, & Johnnie

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Robin Update: Day Five --- 05-20-12

Once again, there has been no significant change in Robin's condition.

On the positive side, Robin ate some breakfast this morning. I special-ordered "cheese grits" for Robin (one of her favorites), and she ate for the first time since Monday night. On the downside, Robin refused to take pills, forcing the nurse to crush the pills and having Mom feed them to Robin in her cheese grits. Same thing with lunch. By dinner time, though, Robin was refusing to eat, too.

Robin is still just "barely responsive." Today, Robin was noticeably less responsive than the previous day. It was difficult top get her to react, and she spoke only about seven words all day. We were hoping to discuss this with the doctor, but he did not show up today.

Robin is starting to look a bit worse, too. Her legs are swollen and her skin is starting to break down in places because she is not moving.

I'll provide another update sometime tomorrow. Hopefully, I will get to speak to the doctor in the morning.

We have received many email notes of prayer and support in the past few days. Thank you. I am sorry that I cannot reply to each one, but I have read them all, and even read some to Robin.

Please continue the prayers and support.

Love to all of you,

Larry

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Robin Update – The Road Home - 05-21-12

Robin took a turn for the worse today.

We struggled all day praying for the wisdom to make the right decision regarding Robin’s treatment direction. We saw two paths before us. We could move Robin to a long term facility and continue the antibiotic treatments, hoping to see the improvement that has eluded us thus far. Alternatively, we could call Hospice and go home to let nature take its course. All day long, I tried in vain to get Robin to help with the decision, but she was unable to respond. Late in the afternoon, the decision was made for us. Robin was clearly losing the battle.

(SKIP THIS PARAGRAPH, IF YOU DO NOT WANT DETAILS).

Sunday, Robin developed a large blister on her right thigh. During her bath, the blister popped and revealed a boil beneath. The nurses treated it and covered it. Today, at bath time, they uncovered the wound to reveal a necrotic cyst. A couple of hours later, Robin’s whole thigh was red and inflamed. The normal treatment is surgery to drain and clean the cyst, keeping the wound open for weeks until it heals from the inside out. But Robin is already fighting the urinary tract infection (UTI), and this aggressive infection is more than she can handle. The surgery might even be considered “abusive” considering how much she is already suffering.

Based on the direction that the treatment must go, we decided that Robin would not want to take that path. We chose to bring her home to provide Robin with the comfort she deserves. It will take the hospital some time to make arrangements and fill out the paperwork, but we expect to get home sometime on Tuesday. From there, we will wait to see what happens.

We have faith that Robin, who served God for her whole life, will soon be playing piano again for Him. Please continue to pray for us as we deal with the path that lies before us.

“Thank you” to everyone for your support and understanding. Even though I may not have responded, I have been reading your email messages and cards. Your love and compassion has helped us for many years. I’m sure we still have some difficult days ahead, and we will be relying on your continued prayers and support.

--- Larry, Robin, John, & Johnnie


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Robin Update: Robin is at Home - 05-22-2012

I am totally beat, so this will be short.

We finally got Robin out of the hospital at about 5:00 PM, after signing tons of paper. We got home at about 5:30 PM.

Several friends stopped by, and in the midst of their visit, the hospice nurse arrived to evaluate and admit Robin back into hospice. After signing another bunch of papers and answering fifty or sixty questions (maybe for the third time that day), Robin was back in hospice.

I'll try to write more later, but it is late and I can hardly think.

Please keep us in your prayers.

--- Larry, Robin, John, & Johnnie

Springtime with Robin--- 05-06-2012

The last update was about a month and a half ago, at the end of March. When I published the blog entry, I stated, “There was another UTI (Urinary Tract Infection) about three weeks ago, so I figure Robin is due for another one this week.” Well, sure enough, she was diagnosed with another UTI within days after I wrote that sentence!

So, here’s what happened since March 20th. Robin started and finished a seven day course of IV antibiotics. She got better and was good for a week, then got sick again with the same bug. This time, she started and finished a ten day course of the same IV antibiotics. She got better and did well for about ten days. The early signs of infection appeared again, but Robin denied she was ill, not believing it could happen again so soon. At John’s insistence (over three days), Robin finally sent the test sample to the doctor on Friday afternoon, too late to get results before the weekend. I think she sent it in just to get John off her back. By Monday (4/30/2012), we found she was sick again with the same bug. Monday night at 10 PM, she started another ten day course of the same IV antibiotics. Unfortunately, over the weekend, the infection got the best of her and on Monday Robin started to become delirious (loopy). By Tuesday, she was totally out of it, sleeping most of the time and talking incoherently when she was awake. When her hospice team saw her, they thought that this was the end, and she would not pull out. However, on Thursday, I had my wife back again (at least part time), and over the next few days, Robin has continued to improve. She is one tough woman!!! At this writing (Sunday night), she is back to normal (whatever THAT is). Of course, each time she goes through one of these bouts of delirium, she never quite gets back to 100%. There is always some small loss of mental acuity, but it may not be perceptible to most people.

Robin’s other issues (pain, eyesight problems, blood sugar spikes, fluid retention in her arms and side, rashes, skin infections, and broken teeth) persist. However, Robin still maintains a positive attitude and an inner peace that I have difficulty understanding.

Robin’s Mom (Johnnie) arrived right after Easter, and stayed for two weeks. Her visit happened to hit at the right time when Robin was not sick. Her presence here is always a boost for Robin, and a big help to me. Johnnie doesn’t know how to sit still, so she stays busy doing things for Robin or stuff around the house. We were all sorry to see her leave.

Last time I wrote, I said that Robin had a new iPad2. She has used it to video phone her mother (using her grandson, Matthew’s, iPad), and to talk to my brother and his family (mostly, Kelli and Maureen) by video. I think she would enjoy video calls from other folks, too. If you want to try a video call to Robin via “Facetime,” send me an email and we can give you her “Apple ID” so you can call.

Thank you all who work to keep Robin’s spirits up in so many different ways. Robin has received cards and notes, phone and video calls, wacky gifts, visits, meals, flowers, chocolate, and cookies. Most of all, we thank you for your gifts of time to prepare and send these things, and the time to help Robin by shopping, reading, praying, or helping her in a special way. Your continuing love and encouragement to Robin has helped her cope, and is a great assistance in keeping her positive. God bless you all!

We thank God daily for the good that you do.

Love,
                  --- Larry, Robin, & John