Going Home

As of Friday evening, the only thing preventing Mom from discharge was her lack of appetite. It has improved greatly since then. We just spoke with the doctor, and Mom will be coming home this afternoon.

A wound care specialist examined Mom's c. diff. rash on Thursday. She said it was comparable to a third degree burn. She prescribed a regimen of alternating salves, and the rash has improved remarkably. She is still a little red and sore on her legs today, but she is not in pain.

Mom is not eligible for acute rehab. She may be eligible later, but not today. Rather than send her to sub-acute in a long term care facility, she will receive in-home rehab through Vital Care. Mom's physical ability and emotional state have always been better at home than in the hospital; long term care is just not an option.

Mom is off all the neorological prescriptions. Her bilirubin count was 1.0 today. All her labs came back great except her magnesium, which she will continue to take at home. Her specimens have been negative for c. diff. for several days, but she will continue with the flagyl for several more days.

Mom is looking forward to going home. She's a little down, but we expect her spirits will pick up when she's back in familiar surroundings with the Wises. She's looked on the floor several times a day looking for cats. They've missed her too.

I'll write again throughout the week to update you on her progress. We have lots of pictures to share that we're unable to upload from here (no access to hard drive). Thanks for checking in.

Recovery and Rehab

Mom is still at NMRH. We're hoping she will be admitted to acute rehab at the hospital. Dr. Galloway would like to see her stay in rehab for a couple of weeks, time enough to recover the mobility she had gained before taking the Keppra. The alternative solution is sub-acute rehab in one of the local long term care facilities. We'd rather not have Mom receive services in long term care if we can avoid it, because we don't want her to think we're leaving her there. We had an unfortunate discussion with a doctor back in January who spoke in Mom's presence to Suzy about placing her in a home. It was very disturbing to us and to Mom. If sub-acute is our only alternative, we'll need to assure her that the stay is only temporary.

Suzy told me yesterday that Mom was spacey again. Dr. Galloway ordered withdrawal of the Neurontin and the Tarceva to see if she improves. Mom also has a painful rash from the c. diff.; she receives salve for it, but between the diarrhea and the hours in bed on her back it's becoming a long healing process.

Before I left for Grand Rapids on Monday, Mom gave me an exclusive interview (she turned the major networks away) on her stay at NMRH. The video was 17 minutes of mystery, breathtaking vistas and song, way too large a file for blogger so I had to split it in two - part two is in the next post. You'll notice the red splotches on Mom's face, acne from the Tarceva. She has a special cream applied to it three times a day to clear it up, but it's only a matter of time before she spoils it all with the chocolate.

Correction

An update to the above post wasn't saved before I published. Mom has not discontinued Tarceva. Dr. Galloway ordered discontinuation of the Neurontin to see if Mom's mental state improved. If there is not improvement, we will discontinue Tarceva but not until we're certain the other medications are not the cause. So far, the Tarceva seems to be working well.

Recovery and Rehab - Part Deux

The story continues...

Monday Update

Mom had a sweet sleep after a highly unusual Sunday.


The convulsions Mom began to experience Saturday night continued through Sunday. It seemed every time she began to relax and drift into sleep the convulsions started again, often coupled with vertigo symptoms. She was an endless fountain of information, talking almost constantly about people she used to know, people in the room that weren't there, job duties from years ago at Traverse City State Bank, and the status of her house chores and equipment. Suzy likened her behavior to someone who hadn't slept for several days and had been guzzling Mountain Dew. She dialed up every complex word in her extensive vocabulary and used them in very creative ways. Her humor was Rose Mary snappy, hold the sweet. Bill, Pattie, Cody and Jessy came up for an Easter visit yesterday afternoon and had very interesting and memorable time with her (we're writing some of the conversations down this morning, to be filtered and shared with you later). She was very amusing and was amused by us, but we were anxious to have our sweet Mom back.

Dr. Dabney agreed to place her back on the catheter yesterday; Mom was spasm free for over 24 hours by that time. Part of her spasm issues may have been the size of the catheter balloon. Standardly, 10 cc's of fluid is in the balloon, but Mom had 30 cc's. This may have caused irritation to the bladder. Suzy wishes she had gone to medical school - you don't know the right questions to ask if you have no reason to question. Having the catheter back is good news. It keeps Mom clean and confident. Yesterday Mom told me, "A woman's confidence is key to her sense of security." She doesn't remember saying it, but she is so, so right. And so far, so good. No spasms.

Today Mom is feeling good. Her sweetness is back, as well as much of her coordination and her sense of reality. She had oatmeal, an orange, and Ensure for breakfast. Sometime today she'll eat the cake that Pattie made for her yesterday, and the chocolate Easter cow they brought for her. Yesterday Billy got Mom to eat just one of the ears, so there's a lot left for her to enjoy.

Dr. Galloway noticed yesterday that Mom's bilirubin level increased again - now at 2.9 - so she ordered an ultrasound of her liver. Mom went for the ultrasound this morning before breakfast. Dr. Galloway also wants to move Mom to rehab as soon as she is up to it so they can work on her mobility before she comes home. We love Dr. Galloway.

Thanks for your prayers. More later.

Sunday Morning

Mom seems to be sleeping well as I write. Last night she began to have leg tremors - more like convulsions - and anxiety. Suzy was the first to spot it, just after dinner. Mom had a few more off and on through the evening. She was given morphine to calm her nerves, which, as you know, is her favorite. Around midnight she was still having anxiety, so the doctor ordered Ativan, an effective anti-anxiety medication. At about 12:30 a.m. the tremors increased, about every minute or two for a few seconds. At 1:15 a.m. she was given more morphine. She had a few small tremors after that, and she finally fell asleep around 1:30 a.m. Suzy suspected yesterday that the tremors could be a symptom of Keppra withdrawal. I spoke with the nurse about it last night, and I'll speak with the doctors this morning.

Saturday was full of fun and visitors. Tina and Aunt Dorothy came up in the mid afternoon and stayed for several hours. They read funny church bulletin sayings and laughed a lot. Tina groomed Mom's finger nails for her again. Aunt Dorothy brought her more comfortable clothes, including a pair of super soft pajamas, blue like her eyes. Corey, Jaime, and Jodi were here for several hours, Corey coming twice, once during his lunch hour. Mom was alert and snappy with the humor, even though she didn't have a lot of sleep Friday night.

I'll probably write later today - just wanted to let you all know how the night went and to be the first to wish you a Happy Easter. Celebrate our risen Lord with us today!

Good Friday

Mom had a rough night last night, but overall good day.

Removing the catheter did not immediately resolve her bladder spasms. Around 1:20 a.m., she began having painful spasms every ten minutes. Her nurse, Jason, rounded up a B&O suppository. The "B" is for belladonna, the "O" is for opium. It's the best treatment for bladder spasms there is, and they just got a shipment in (apparently the opium fields in Afganistan were burned and B&O production had been set back six months - fun bit of trivia for you). She was given the suppository just after 2:00 a.m., and was fine for an hour and a half. At 3:30 the spasms resumed, again every five to ten minutes. At 4:00 p.m. she received morphine again. She still had the spasms. Sometime this morning they began to subside, but between vitals, blood draws and spasms her night was fitful at best.

Mom slept a lot and was pretty out of it until mid afternoon, but it got better and became a fun day. Corey and Jodi stopped in to see her. She played catch with Suzy, had a substantial breakfast, lunch and dinner. As I write this she is looking at a crossword puzzle (not really solving it, but trying) and watching Animal Planet.

Today she had her last dose of Keppra. She is much better since she came in Wednesday, and we hope that she'll continue to improve. She had an EEG this afternoon, ordered by the neurologist today. If there have been any changes to her brain we should, between the EEG and last night's MRI, find out soon.

Well, back to the hospital room. I'll give another update tomorrow. Thanks as always for your prayers and support.

Thursday Update

Suzy and I got to the hospital at 11:00 a.m. Mom's color was much better, and we were amazed at her improved ability to communicate. So, so much better than yesterday.

Mom has clostridium difficile, casually called c. diff. by healthcare folks. It is a common bacterium that commonly colonizes people who are on prolonged treatment with antibiotics. The c. diff. is being treated with flagyl. Infection control precautions are in effect, which means visitors donn gowns and gloves while in the room. The gowns are a lovely, sunny yellow. Suzy wears the color much better than me.

Jodi stopped in between classes today for a little while; Mom was very pleased to see her. We brought in pictures and flowers from Mom's bedroom to make her hospital stay a little more homey.

Mom is continuing to receive fluids and drank decaf, gatorade, and water today. She was on a clear fluids only diet until this evening, and she broke the fast with a hot roast beef sandwich with mashed potatoes and gravy, corn, and a brownie.

The urologist visited today. We discussed Mom's bladder spasms, which have been very painful. He recommended removing the catheter to see if the pain is alleviated. It was removed this afternoon. We're hopeful that the removal will help her; however, removing the catheter brings us back to the issue of frequent, urgent need to eliminate. Coupled with her weakness and lack of balance, she has some challenges ahead. Physical therapy will help. She is unable right now to walk, even with assistance, but PT will begin exercising her in bed to increase her muscle strength.

Mom was taken for an MRI of her brain at about 8:45 p.m. While I was talking to Suzy on the phone, I walked to the family waiting room and - lo and behold - a computer! God bless the person who donated the computer. It was provided to assure visitors on this floor can access information about cancer and cancer treatment, and stay in touch with family and friends. So here I am, updating you on Mom's day. I'll give another update sometime tomorrow.

Visit to Oncology

We took Mom to her oncology appointment yesterday morning. Her blood work was all within normal ranges, except her bilirubin which was a little high. Lori, Mom's favorite nurse practitioner, noted Mom's mental changes and her weakness. The Tarceva is doing its work; Mom's cancer is stable. Lori said she'd try to get the neurologist to take Mom off the Keppra over the phone rather than wait for an appointment, and she would try to get an appointment with a urologist for the same day.


We went to lunch while we waited to hear from Lori. After an unsuccessful visit to Mom's favorite, KFC (they're relocating to join with Taco Bell - wish we'd known that before getting Mom out of the car!), we went to Pizza Hut. While in the bathroom there, Mom vomited a lot of fluid. After we cleaned up, we took her back to the hospital. Lori told the Emergency Department to expect us. We checked in at 3:00 p.m.


ED didn't seem busy, but for some reason Mom wasn't taken to her room until 10:30 p.m. Suzy and I didn't leave her room until after 1:00 a.m. It was a very long day. They took blood samples, urine samples and xrays. We ate our pizza in the ED.

If you were praying since Tuesday, here are the results:

• The neurologist agreed to wean Mom off the Keppra. Her cognitive changes are coincidental to the time she began Keppra, and her symptoms are consistent with Keppra's common adverse effects. Her dosage will be reduced by 50 percent over the next three days, then discontinued. We should know shortly afterward whether her mental changes were the result of the Keppra or of the progression of disease.
• Mom's chest congestion began to improve on Tuesday evening. She still has a cough, but it is much better.
• Mom is dehydrated, which is the cause of her low urine output and the vomiting episode. She is receiving fluids. She also has a bladder infection, which is probably related to the increased frequency of her bladder spasms. She is on Cipro, which will clear up the bladder infection and help with her chest congestion. A urologist will visit Mom while she is in the hospital, and she has an internal medicine doctor assigned to her during the hospital stay.

Mom will be at NMRH for at least several days. We don't know at this time whether she'll be home for Easter. I'm packing a bag this morning so I can stay in the room with her tonight. Thanks for your prayers - we know that God hears them.

Update

I apologize for the long delay in posting. A lot has happened over the last three weeks, in the midst of which my visits to Mom have grown to long weekends and my third cold of the season came to roost in my chest. Here's a brief update, hopefully followed soon by more detail and pictures.

Mom's baseline ct taken before she resumed her Tarceva dose showed that the cancer has not progressed. Side effects of the Tarceva seem to be minimal. She has a little acne, which we were told to expect.

Not too sure about the Keppra. This medication was prescribed by the neurologist for her seizure-like symptoms. However, the episodes that briefly short-circuited her ability to walk or respond seem to have spread into an overall lack of coordination.

The cold I've had, and which Suzy shares, seems to have come from Mom. We're better, but Mom had a bad weekend of coughing. Although she has taken Bactrim regularly to help prevent urinary and bladder infection, this bug settled in.

We took Mom to Dr. Karkosak yesterday. He took two blood samples: one for infection, and one for her Keppra level (we didn't know we could have her blood tested for Keppra - makes sense). We'll have the results of the first sample this morning sometime. In the meantime, she stopped taking Bactrim immediately and began Levaquin, which is particularly good for pneumonia symptoms. We learned that since Mom is not taking steroids anymore, which supresses alergy symptoms, that the sulfur in the Bactrim may be the cause some recent bouts of itching.

The continuing undercurrent is Mom's difficulty with elimination. The last couple days her urine output has decreased. Suzy irrigated her catheter on Sunday, and Michelle from Vital Care changed the catheter last night, but her urine output is not keeping up with her intake. We're always pushing fluids as lovingly and firmly as we can; she usually tries to come up with a smart comment about it.

Mom needs everything done for her right now. She cannot stand up by herself; she usually needs two people to help her up. She gets confused easily. Sometimes she can read, and other times she can't make out the words. Although she has had her good moments, her condition over the last three weeks has declined. All except her sweetness and her smile.
Please pray for these things:

• Regaining of as much cognitive ability as possible
• Recovery from her chest congestion
• Accurate diagnosis of her elimination issues

Also, please pray for Suzy and the Wise family, for stamina, physical health and joy as they assist Mom with her needs.