Temperature and Treatment

Mom has had her ups and downs over the last couple of weeks. Ups and downs in temperature, coumadin and potassium levels, mood, ability to communicate - every day or two brings new decline or improvement.


When I returned to Suzy's the weekend of the 6th, Mom was very quiet, incoherent when she spoke, lethargic. I've grown accustomed to seeing marked improvement in her behavior and alertness after a course of antibiotics. The improvement came the morning of the 9th. She was alert, communicative - still quiet, but verbally and facially animated - and in a good mood. She was doing so much better we hoped she might be able to make it to Cody's graduation open house in T.C. But as the week progressed, she began to regress again. The yo-yo effect has continued. She was improved on the 16th, then began to ebb again through the week.

Friday the 20th was a good day. Suzy took the little ones out for their birthday lunch at La Seniorita in Gaylord, and Tina came to spend the afternoon with Mom and me. Mom slept a lot, but when she was awake she was talkative and fun. The antibiotics we started on Thursday night seemed to be doing their work.

Saturday morning, Mom was quiet, inarticulate and had a low grade temp. By the afternoon, she was hovering around 100 degrees. We began giving her childrens tylenol in oral suspension to try to bring the fever down. It seemed to help, but today her fever climbed slowly to 101.6. Suzy called Dr. Karkosak, and he told us to give her 1000 mg of tylenol, then motrin in the evening. The last we checked her temperature it was back around 100 degrees.

Right now, Mom is sleeping well and is comfortable. Suzy asked her if she was in any pain, and she mouthed an emphatic "no." So, we're keeping her as cool as possible, door open and fan running. It's a beautiful day here in Boyne City for keeping the door open. It's warm and sunny with a lovely breeze. I propped Mom's head up to her left so when she opens her eyes she can see how beautiful it is outside.

There will come a time when antibiotics and tylenol will not help Mom anymore. We're hoping that time is not soon, but we believe Mom's life has always been in the Lord's hands and that nothing will take her from us out of his will. Please pray with us that Mom's time continues to be peaceful, comfortable and joyful.

Under the Weather

We have been enjoying rain, rain and more rain here in Boyne City, Michigan. Everything is wet, including the clothes on the line.

For the last few days, Mom has been very sleepy and has communicated with difficulty. Nurse Catherine took her vitals on Friday; her blood pressure was 110/68, her lungs sounded clear, her pulse rate was good. She did have a slight temperature; her temperature and her change in behavior was consistent with her history of infection. Catherine took blood samples to the lab and we waited for results. Although it was a Friday and the impending inaccessiblity to services loomed over us, Dr. Karkosak was able to write an order to resume the sodium chloride hydration and Catherine hooked her back up early Friday evening.

Saturday, the rain let up for Haley's graduation open house. Mom had lots of visitors, including Dr. Karkosak. He told us to resume the antibiotics orally since she was still able to swallow her crushed pills (we them with fruity yogurt and a little bit of sugar). By Sunday morning we could tell the antibiotic was working. She was still very sleepy and slow to respond verbally, but she was much more present.

Sunday afternoon, Jon and Linda Darrow drove from Alma to visit Mom. We caught up on the news from our families, and Mom listened whenever she was awake. Olivia introduced them to Wii bowling before they returned home. As they left, it occured to me that I hadn't taken any pictures of their visit! We just had too nice a time.

Mom ate a few bites of baked beans in the evening, the first food other than yogurt since Friday. This morning I woke up at 6:45 a.m., and she woke up too. She replied to me when I wished her good morning, and when I asked if she was thirsty. I got her a glass of water, and she was able to suck it through the straw - another improvement. We've given her water by spoon and ice chips since Friday.

Nurse Catherine will be back today at 9:00 a.m. to check her out. In the early afternoon, Uncle Howard and Aunt Dorothy, her brother and sister, are driving from Traverse City to see her.

I have a few pictures from Saturday that I'll post when I get back to Grand Rapids. Thanks for checking in.

In My Dreams

When we last left our heroine she was seen reclined in 250+ thread count comfort watching musicals and entertaining us with her vocabulary. She's still there. Bill, Pattie, Jessy and Tyler came for a visit on Sunday. We mostly hung out in the room and talked while Mom drifted in and out of her nap.

Vital Care Nurse Catherine visited on Monday to draw blood and check the IV. Mom finished her course of cipro on Saturday night, and since she was well hydrated Cathering removed the IV tubing from her port - on Dr. Karkosak's orders. This will give her body a couple of days to get rid of the excess fluid, a problem we are happy to have after the shananagans of Memorial Day weekend. When she needs fluids again, we'll be ready.

All Mom's vital signs are good - pulse, blood pressure, temp - and her lungs sound clear. Her ankles and knees are swollen from fluid. This may be due in part to the hospitalist's orders to give her 100 ml p/hour prior to her discharge. Dr. Galloway asked him to reduce it to 10 ml, but he did not. Dr. Karkosak dropped it back when Mom arrived home. Who knew too much sodium chloride could be a bad thing? We went from famine to feast in no time flat. Suzy is continuing with the 250 mg magnesium morning and night, with Dr. Karkosak's consent.

Mom's been sleeping a lot this week and talking less. The kids make regular visits to Grandma to draw her out. Sometime soon I'll post a list of her famous sayings of recent past. But I can share my personal favorite with you. Every night at bed time Mom and I have a routine. I say, "I love you so much." She says, "I love you too, Patty." I say, "I'll see in my dreams." She usually says, "I'll see you in mine," but this particular night she replied, "Well, let's not get maudlin here."

Now, that's my mother.

Care at Home

Mom came home by ambulance on Wednesday. Tina, Tami and Devon came to visit, just as the paramedics were dropping Mom off. A Vital Care nurse walked Suzy through the steps for administering Mom's IV fluids. Suzy has become very proficient at switching between the bags of cipro and saline. She commented last night about all the fuss that was raised about sending Mom home with IV fluids and needing a physician's oversight. It's gone very smoothly.

Mom has gained a little more presence and a little more conversation every day. She has blessed the kids with more Rose-isms. Last Thursday, Jodi was helping her get dressed and told her "Good job," when they were finished. Mom replied, "I hate it when people say, 'Good job.'" Jodi asked, "Okay, what would you like them to say?" Mom said, "I would like them to say, 'You have soft, silky skin.'"

And you know what? She does.

Mom finished her IV antibiotics last night and her saline early this morning. Her appetite has improved. She retained water while she was at the hospital. On Thursday, Mom's ankles, knees and hands were swollen. Suzy has been giving her magnesium and vitamin B complex to help her body get rid of the excess fluid. It's working well. She has some pain in her joints, particularly her knees and her right thumb, only when she moves them.

The kitties are very happy to have Mom home. Teddy and Babbette have taken turns keeping Mom company. Sometimes Teddy gets a little carried away and tries to lay on her chest, but most of the time he restrains himself. Mom loves it.

Yesterday I told Mom that granddaughter Karalyn contacted me online to find out how she was doing. Mom said, "Karalyn? Oh, that's wonderful!"

Mom is happy to be home in her own bed. We're happy and relieved to have her here. As usual, she is doing better at home, and we're determined to do everything we can, in her best interests, to keep her here.

Sodium Chloride To Go, Please

Mom will be discharged from the hospital today.

Throughout the stay, there have been staff care for her who know her and are happy to see her. Then there are the others. From the ED Saturday to the hospital room yesterday, Suzy has been confronted by doctors and nurses who insist on reminding her that Mom has cancer. If anyone knows, it's Suzy.

The problem is, we are following Mom's medical directive for treatment. Mom wants to live as long as possible, and she recovers from infection with antibiotics and fluids. Even though Mom is in bed most of the time, she is content and loves her life. We ask her. She tells us. On Saturday, Suzy asked her if she wanted to go to the hospital and if she still wants to fight. Mom said yes.

Eight years ago this month, Dad left the hospital after a four month recovery from a severe heart attack. In the beginning, his cardiologist told Mom she was asinine for not taking him off life support. But Mom knew Dad was a fighter and that he wanted to live. She was the brunt of constant criticism during those months, and she responded to the criticism with grace. Her reward was to take Dad back to CCU to say good bye to the nurses who didn't believe he would live.

We just want Mom home.

A doctor yesterday was going to send Mom home without fluids unless we could provide a doctor to monitor them in the home once a week. God bless Dr. Karkosak. He called the doctor's bluff and promised to check on Mom. So she's coming home with the IV in her port and she'll get the fluids we were promised by hospice three weeks ago.

Tina, Billy and Pattie came to visit on Sunday and stayed most of the day. Mom was asleep most of the time.

On Monday, I brought in the shawl Roleen made her and her picture of Makayla. Makayla's picture makes Mom - and everyone else - smile.

Good Bye Hospice

Hospice has a wonderful reputation for providing help for patients and families with end of life care. We were hoping hospice would be good for Mom, but unfortunately it has not.

One of our conditions of Mom's enrollment in the hospice program was that she would be provided with IV antibiotics and sodium chloride at home. Suzy was assured - twice - prior to enrollment that hospice would provide them when needed. Mom's oncologist spoke to the hospice agency herself, asking if they needed her to write a prescription because Mom's condition was very good when she had fluids. She was assured a prescription was unnecessary.

After enrollment two weeks ago, each new hospice representative that came in contact with Mom had a new story about which of her medications were covered. Their ambiguity immediately became a cause for concern. By last Wednesday, Suzy was told that the only medications hospice would cover is the albuterol for Mom's nebulizer treatments. This ruled out her blood thinner, her antidepressant, her antibiotics, her beta-blocker - everything that is keeping Mom comfortable and alive.

Suzy informed the nurse that this was not acceptable. Over the next two days the nurse discussed Mom's case with the medical director. By Friday, they were willing to make some substitutions on several of her meds, but would not cover the flagyl, which had been ordered by the NMRH infectious disease doc to be administered with cipro to avoid another clostridium difficile infection.

Saturday morning Mom woke up vomiting, disoriented, and with a 102 degree temp. We recognized the symptoms from previous urinary tract infections, so we called the hospice nurse. We were told that that hospice would not provide the IV antibiotics and fluids. Our only course of action was to begin administering her cipro and flagyl (still have a pre-hospice supply) again, and tylenol to reduce the fever.

Subsequently, we have discontinued hospice and are in the process of admission back into home healthcare so she can receive IV fluids. We tried to make it happen Saturday, but it is not only a weekend but also a holiday weekend. The Vital Care nurse on call had several calls ahead of us, and by the time she returned our call at 6:30 p.m. she said it was too late to admit her and to get the IV fluids from their pharmacy.

So, I'm writing you from the third floor of NMRH again. We were in the ED from about 8:45 p.m. until 2:00 a.m., then left her room at 3:20 a.m. The fluids she received in ED did the trick, just as we knew they would. Mom is in her room right now with Suzy and Jaime. Still drowsy and weak, but so much better than yesterday morning.

I have more to say about what happened to us this weekend. But right now I'm going back to sit on Mom's bed, hold her hand and thank God for his help yesterday.

Cookies & Smiles

Last weekend Mom had some good days. Even though she was still unable to finish most of her sentences, she was more alert and present than she has been in a while.

On Saturday, Dick and Grace came from South Boardman to visit. They haven't seen Mom since we stopped at their place last July. They stayed for several hours, long enough to visit with Suzy, Paul and the kids after the church yard sale. Mom was all smiles during their stay.

On Sunday Tina drove up from Traverse. She had been scheduled to volunteer at the annual college barbecue, but her supervisor told her to go see Mom instead. So Mom had a nice visit with Tina and received her traditional manicure. Tina stayed long enough for one of Suzy's cookies baked fresh for Sunday night youth group.

Since we're not monitoring the cancer anymore there isn't much to tell you in the way of Mom's health. She seems to be getting weaker, but then she has good days, like last weekend. We're all grateful for every day, good and not so good.

This weekend, Bill and Pattie plan to visit, and Jon and Linda are planning to drive up from Alma on Memorial Day.