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.

Mothering

Last Sunday was Mother's Day and the family was together again, minus a few grandchildren (Karalyn, Ben, Crystal, Jon). Mom tried to get to get up, but it was too challenging and she spent the day in reclined comfort while the rest of us roamed in and out of her room. She received lovely plants: a Sun Star from Bill and Pattie, a cactus garden from Tina and Mike, a Freesia from Pat, an African Violet from Aunt Dorothy, and a Gerbera Daisy arrangement from Tami and Dan. Her room is surrounded with life.

We had a nice buffet-style lunch of ham, pasta salad, deviled eggs, meatballs, and potato salad. Mom ate and drank little, but she had a some ham later in the day.

Hospice began services on Tuesday. They introduced themselves and discussed medications and respite services. It sounds like respite has to be pre-arranged way in advance and on a regular schedule because they use volunteers. This may not help Suzy much; we'll have to wait and see how it plays out. In the mean time, I'm looking at my calendar and planning for more days with Mom.

Mom is speaking more slowly and more shallowly, continuing to try to finish sentences. Sometimes she does. Last night I read to her from the devotional Bill and Pattie gave her for her birthday. The passage was from Peter 1:6-7. The author suggested that we receive trials and suffering as honored guests in our lives. I told Mom I thought that was an interesting way to look at it. She replied, "Yes, it certainly is. What I don't understand is...why am I like this?" It took five minutes for her to get the sentence out, but she did. When I asked her what she meant, she didn't remember. So we shared I love yous and hugged.

Wednesday was my birthday, and Mom sang to me over the phone. It went like this:
Happy birthday to you
Happy birthday to you
Happy birthday dear...
(to Suzy) ..who am I talking to again?
We all laughed. We're losing some things, but not our collective sense of humor.

Mom has become more tactile as her words have waned. She frequently examines the hem of her sheet, the fabric of her gown, touches my hair and caresses my arm as I feed her. When Suzy kissed her good night last night, Mom gave her five or six tender kisses on the cheek. She likes to hold hands. Even though she can't draw her thoughts together easily, she has no trouble saying, "I love you, Suzy." Her brain may fail her, but her soul still mothers us like she always has.

The Spoken Word

Before a word is on my tongue you know it completely, O Lord.
(Psalm 139:4)

The last couple weeks have flown by. It seems that every day has so much to tell that my mind and my fingers can't keep up.

Since Mom came home from the hospital her personality has been more evident. Included in the return of her personality is, of course, her humor, but also a little sadness and frustration. We've taken the frustration as a healthy sign that she is more in touch with reality. It's amazing even now how well she is holding up under the circumstances.

Last night Mom began her second round of cipro and flagyl since her return from the hospital. We're administering the cipro on the first signs of bladder pain, as the infection disease doctor instructed. It's working well. Michelle from Vital Care changed her catheter yesterday.

Mom's care is shifting from home nursing to hospice care. Beginning Tuesday, hospice will take over where Vital Care is leaving off. She will be discharged from physical therapy, but yesterday Wendy left Suzy with instructions for exercises Mom can do. We don't know yet whether she will still receive occupational therapy.

Mom's ability to communicate is becoming an increasing challenge. She knows what she wants to say, but she loses her words in early to mid sentence. Sometimes she'll drift into thought while she's trying to regain her words. Last Monday as she was drifting, I looked her in the eye with my eyebrows raised to signal I was listening, and she threw me back a cocky version of the same look. We both lost it!

I've been reading to Mom from the book of James. Last Sunday we got to chapter four and, since James was becoming increasingly serious, we decided to look for something a little more encouraging. I asked Mom if she'd like me to read Psalm 139. Her eyes widened and she said, "That's my favorite Psalm." So I read. When I finished, I told her the verse that stuck with me was the fourth, because God knows what she wants to say, even though we, and even she, may not know. She replied, "I didn't think of that. What's amazing to me is..."

The overriding theme at this time as always is God's grace in the midst of difficulty. Other than her bladder issues, Mom still has no pain. No pain. Dr. Galloway told her on Wednesday she was most amazed by this, because many of her patients experience pain. Although the time may come that Mom does experience pain, we are very grateful that she has had so much time without it.

I haven't taken any pictures recently, but below are a few from a couple weeks ago.

Watching Animal Planet at NMRH.
Receiving birthday card from grand-daughter Karalyn.Making churros with the family on 4/26. Paul is showing Mom his new antique book on world history, the Czech section.
Evan is slowly but surely turning Grandma into a gangster.