Friday, April 25, 2008

Where the Heart Is

Mom continues to improve at home.

On Tuesday evening she joined her weekly women's bible study at home. The bible study group has met over the last few months at Suzy's so that Mom can participate. Suzy told me that Mom was not only able to stay and listen but also to give input. This is a big deal, a big change.

Wednesday was Family Night at the church. She has been looking forward to attending. She did go, but it wasn't an easy event for her. The important thing is she tried, and it was the first social event outside the home she has attended in weeks.

PT, OT and Nursing came to visit on Thursday. Suzy said Mom was particularly slouchy. She tends to list to her right when sitting, laying, standing, but Thursday she was also leaning forward. The OT asked her to look her in they eye with the purpose of getting her to sit up straight. Mom stayed slumped in her Quasimodo position and looked up at her (makes me giggle just thinking about it - I wasn't there). Suzy told me she would have been frustrated if she were the OT, but the OT smiled, laughed and said, "You're so much fun!"

Which brings me to the best news...Mom's personality is increasingly returning. She has always been sweet, but she's been more compliant the last few weeks than she ever has in our experience. The Mom we grew up with always has a snappy come back that her audience may or may not get. She's always thinking of something smart to say, some way to twist the humor into a phrase or a word. That's the Mom we've been getting back.

No pictures this post. I'm about to hit the road. I'll try to give an update over the weekend.

Tuesday, April 22, 2008

Settling In

Mom has been home for four days and she's a little better every day. The c. diff. still keeps us hopping, but it's improving. Best of all, Mom's personality is coming back. We've missed her snarkiness these last few weeks.

Last weekend we kept it simple. We had beautiful weather, and we were able to enjoy it on the deck for a little while. The rest of the weekend we watched Red Skelton episodes, Going My Way, and Holiday Inn. I cried a couple times during Going My Way, especially at the part where Father Fitzgibbon is reunited with his mother. Mom said she almost cried once. I guess I'm sappier than she is.
Tina came up Sunday evening for a couple of hours. We looked at pictures and watched Mom's dvd family album. It was a fun visit.

Physical therapy came to visit on Monday and Mom did her exercises in bed. She hasn't been able to stand well, even with assistance, since she came home. But we're optimistic about the days ahead.

I didn't take pictures last weekend. I didn't really think about it in the midst of the movies, conversations and other business. But I do have a couple of pics from Mom's physical therapy appointment with Wendy before her last hospital stay. It's a great blessing for Mom to receive PT at home.

Friday, April 18, 2008

Birthday Party April 12

I'm heading back up north at 3:30 p.m. today, so I thought I'd send some of Mom's birthday pics while I have bandwidth on my side. We had a great time.

Jessy, Cody, and Tina holding Makayla.


Balloons gallore over Cameron, Tina, Makayla, Mike and Corey. Corey has been working on his PR skills with Makayla.

Dan center, with Makayla and Mike. Dan entertained us exotic sayings.




Present time! Mom donning new birthday scarves from Haley.


Mom, Olivia, Cameron and Jaime. Evan hiding in the rear.

Jodi helping Devon launch a rocket at Uncle Paul, Uncle Bill and Papa Mike.


Makayla takes after her mom.


Going Home

Dr. Galloway met with Mom and Suzy yesterday and spent an hour. We appreciate Dr. Galloway. She has always been candid with us, but also gentle and caring. Her mother has the same diagnosis as Mom; she has commented that their medical charts are nearly identical.

Mom is no longer a candidate for Tarceva. Although it is keeping the cancer in check, it is also the underlying cause of her repeated infections. Tarceva was her last line of chemo defense; there will be no more chemo for Mom.

We have known all along we would eventually receive this news. Attacking the cancer with radiation and chemo was the fight Mom chose. It has given her more time, and that is what she wanted. But as time becomes increasingly precious, the risks of the chemo on the quality of her time outweigh the benefits.

Suzy said Mom was quiet when Dr. Galloway gave her the news. When Suzy asked Mom how she felt about it, she said, "Well, so be it." Suzy gave her a hug. Later, she pointed to the nursing duty board and said to Suzy, "I have a message." You never know what you'll get from Mom these days when she points into the air with an announcement. But Suzy saw she was pointing at our addition to the board: Rose Mary needs nine hugs every day - basic maintenance. Consequently, Mom has chosen her new line of defense.

Mom will be discharged at noon today. We don't have details yet regarding her physical therapy and treatment. We do know that she will be able to receive IV medications at home, which will help us avoid hospital visits. She has been looking forward to sleeping in her own bed, and so have we. Thanks for your prayers.

Thursday, April 17, 2008

Tax Day

On Tuesday morning, Suzy and I walked into Mom's hospital room thinking we would stay with her long enough to visit with Tina, Bill and Pattie, then go mail Mom's tax forms. We discovered upon arrival that she had been put back on a clear liquid diet. We asked why, and the nursing staff didn't know; just that the doctor who had seen her before we arrived had ordered it. When we pressed for the reason, the nurse contacted the doctor. Turns out that the doctor felt she might be confused and unable to swallow safely. She was immediately returned to her unrestricted diet.

Throughout the day, as Suzy asked questions regarding Mom's treatment, she was met with defensiveness from the nursing staff. Mom was given a rectal catheter on Monday night per doctor's orders (we were in agreement to this) in order to prevent another c. diff. rash. She repeatedly lost the catheter. After the third time, a nursing staff from ICU with experience in this area came to reinsert it. The pain of insertion each time was excruciating for Mom, and this time the catheter came out immediately. The nurse then told us that Mom's rectal sphincters were not tone enough to retain it. By this time, Mom had already begun to develop a rash. Now, she had the rash and an irritated colon and rectum to deal with as well. No more rectal catheter.

An infectious disease doctor visited us on Tuesday. He recommended treating future urinary tract infections with a dose of antibiotics and a prophylactic dose of Flagyl. This way, the treatment of the UTI would not trigger the c. diff. infection, and we would avoid the problem of creating a resistant strain through repeated antibiotic dosing. It makes sense to us. But first we need to get rid of the current problem and get her home.

Mom's spirits are good, in spite of it all. Her cancer is still stable, and she is comfortable except for the c. diff. issues. Dr. Paz recommended a yogurt shake twice a day to encourage growth of the good flora in her colon. Suzy has acidophilus at home to maintain them.

Suzy is meeting with Mom's oncologist tonight. Hopefully they will be able to determine when Mom will be able to come home and how we can help prevent future hospital visits. Please pray that our communication with health care workers regarding Mom's care becomes easier and that they will be able to hear us. I'll try to post again tonight.

Tuesday, April 15, 2008

Update

Mom was much better on Monday. She was sleeping comfortably when Jodi dropped me off just before 10:00 a.m. When she woke up, I gave her a hug and told her I loved her. She replied, "I love you too, Patty." I was relieved to hear her say my name and complete a sentence. Throughout the day her ability to communicate improved. She even shot off a couple snappy quips.

Mom has c.diff. again. We asked Dr. Paz last night if there was anything we could have done to avoid it. The problem is that c.diff. lives in our bodies all the time. We never get rid of it; we just keep it in balance. Even though Mom had just finished her course of Flagyl, the c.diff. probably reared up again because of the urinary tract infection.

Mom's INR was very high on Monday - 7.6. Dr. Paz prescribed a vitamin K drip to bring it back down. Dr. Paz attributed the high INR to the antibiotics. She is also receiving magnesium and potassium supplements, Flagyl - of course, and fluids. She was oxygenating well without help last night - 96 - so she is no longer receiving oxygen.

Mom is eating - had cod, potatoes and a nutritious milk shake last night.

Tina is leaving Traverse around 9:00 a.m., and Bill and Pattie are leaving around 10:00. So Mom will have most of her kids with her this morning - Paul and Mike won't be here.

We're off to the hospital. I'll post more tonight.

Monday, April 14, 2008

Weekend Excitement

Saturday was Mom's birthday and it was a big event. The kids blew up the 73 balloons with helium. Corey and Evan serenaded Mom with the happy birthday song - helium style. We dined on ham, scalloped potatoes, meatballs and quiche. The Easter egg hunt was unfortunately called due to snow. There were lots of great presents, including roses and chocolate. Lots of chocolate.

Mom was not herself on Sunday - aware but not very responsive. A few things brought a big smile to her face, particularly Makayla. But by early evening she was exhausted and went to bed.

Sunday morning I gave her the Tarceva a little after 7:00 a.m., and she seemed sleepy but fine. At 8:30, I asked her how she was doing, and she responded with gibberish. I could tell she knew what I was saying and was trying to respond, but couldn't. Suzy and I suspected another bladder infection. The Vital Care nurse had taken a speciment during Friday's visit and the results were due Monday. After the last hospital stay we were reluctant to take Mom back; she had such a wild ride with all the medications the hospital administered, and we knew she wouldn't get the immediate care she receives at home. While we were still deciding whether to wait until Monday for antibiotics, we checked Mom's temp and it was 100.6. Shortly afterward she threw up. So the decision was made for us and we bundled her up for the hospital again.

We arrived at the ED shortly after 1:00 p.m., and her temperature had shot up to 103.9 . The staff were very attentive. They immediately gave her fluids and a tylenol suppository. Her blood pressure was a little high at first, as well as her heart rate. Her blood oxygenation was good, but came down whenever she shook from the chills. Later in the afternoon they administered a drug to bring her heart rate down. By the time she was taken to her room, her temp was down to 101.

While we were still in ED, Tina and Mike came up. Mom was less responsive than she had been at home, but I could tell she was happy to see them. They stayed with Mom until she was settled in her room.

We should have pushed for that gold card we talked about because our wait for admission and a room was six hours. We don't have any complaints though. The last time we had no idea why we were waiting. This time the nurse kept us up to date and checked on us frequently.

Suzy left explicit instructions with the night staff regarding Mom's need for attention, particularly her inability to use the nurse call button and the rash she suffered last visit. We were assured by her nurse that they would keep a close eye on her. It was hard to leave her, but we did.

Suzy talked to the nurse this morning. Mom was up several time during the night, but she is doing well this morning and "has a bright smile." We haven't seen that smile since Saturday, so we're very relieved. Her temperature is down to 99. Suzy and I are heading up separately today. Hopefully I'll be able to post another update from the hospital on the third floor computer. Mom isn't on the third floor yet with her regular crew of nurses and her million dollar view. She's on the second floor with a window overlooking a gravel roof. But they plan to move her as soon as a bed is available.

Thanks for your prayers for Mom. Please pray for Suzy too. She has a bad chest cold and is very tired and achy. She is taking Mom's scheduled appointment with Dr. Karkosak this morning while I go ahead of her to Petoskey.

More later.

Thursday, April 10, 2008

Video and More Pics

Mom's discharge from the hospital on March 30 was performed with pomp and circumstance. Techs Heather (blonde with pony tail) and Carrie escorted Mom to the car with special cart that kept her upright for easy transfer to the seat. There was still a little maneuvering involved, but we thought it was pretty cool. There were a few nurses, techs and doctors who demonstrated exemplary professionalism and genuine care during Mom's stay, and Heather was one of them. If you're ever admitted to the third floor of NMRH, ask for Heather.

(Note: If you are reading this in your email account, you may not be able to view the video below. Click on the link "Everything"s Rosie" at the bottom of the email to view it on the website.)

Last Sunday, April 6, Tina surprised us with a visit. They were late for church in Traverse and decided to just come up and see Mom. So Tina, Mike, Devon and Makayla spent the afternoon. In keeping with the new tradition, Tina did Mom's nails.

Monday we went to Petoskey for Mom's follow-up with her oncologist. Dr. Galloway was very pleased with Mom's progress. Mom is off Flagyl now, and she no longer needs to take a couple other medications. She will have another ct in a few weeks to check for cancer growth against the baseline ct taken on February 29.

Saturday is Mom's birthday, and we're planning a big bash. We will have the Easter egg hunt and eat the Easter ham we put on hold during Mom's hospital stay. We're renting a helium tank to blow up 73 balloons. We have so much to celebrate!

Wednesday, April 9, 2008

Million Dollar View

While Mom was at NMRH, she stayed on the third floor overlooking Little Traverse Bay. Patients, visitors and staff walking past her room would pause to admire the bay and shoreline. Dr. Paz told us they referred to Mom's room as the one with the million dollar view.

We made sure Mom had plenty of pleasant things to look at during her stay. She had flowers, pictures, and chocolate everywhere.
Uncle Rich will appreciate this next picture of the nursing assignment board in Mom's room. Pictures of Mom's EEG, done in her room.



Mom relaxing over a cup of not-half-bad decaf.

I'll post more pictures of Mom's hospital stay and return home within the next couple of days.

Sunday, April 6, 2008

Home for a Week

The last week has been challenging for Mom, but on the upswing.

The c.diff. rash is very much better. Suzy tried vitamin E on it the first night home, and Monday morning it was nearly gone. It's still not completely cleared up, but Mom is not in pain with it. We don't care what color her hiney is, as long as she's comfortable.

Suzy began administering Mom's Tarceva early in the morning. Tarceva must be taken on an empty stomach to be effective; food interferes with the body's ability to utilize it. We were giving her the Tarceva at night, but sometimes it turned out to be very late if Mom had a snack in the evening - we would have to wait two hours to give her the pill. So now she gets it around 7:00 a.m., then she can take a nap and have breakfast anytime after 8:00 a.m.

Physical therapy and occupational therapy came to evaluate her last week. Considering all she has been through, she did very well. PT and OT will continue to visit her in the home. If Mom improves to the point that she is eligible for acute rehab, we will get her in for some more intense therapy.

Mom is still quite forgetful, but is more herself than she she was this time last month. She has been a little down, but smiles and laughs easily with the proper prompting. Evan is very good at making Mom laugh.

I can't post pictures today, but I can give you some of Mom's memorable quotes from her stay at the hospital. It's okay to laugh - Mom laughs at these too and can't believe she said them!

"I don't think Tami will go for this sort of thing." (visiting on Easter)
"What sort of thing?"
"Dramatic opera."

"Those people look like ghosts."
"What people?"
"The horticulturalists."

"He says that's awesome."
"Who's he?"
"I don't know," pointing to left at no one, "but he keeps butting in on our conversation."

To Suzy about Pat:
"Are you trying to instill fear in your little sister?"

To Corey:
"You have to have faith in your own drownings."

"I'd like to take a nap. Does anyone want to take a nap with Grandma?"

To Corey:
"Look, Buster Brown, you'll be lucky if you ever make it out of here."

"Evan was such a beautiful baby. He was perfect."

"Do you remember Delores Brinkman?
"No. Was she a friend of yours?"
"I don't think Delores Brinkman was a friend to anybody."

"I've come close to falling three times, and I think I've done pretty well to catch myself even though I haven't received any consideration."

"Yeah, that was pretty good with only one leg."

After a big surprise belch, to Suzy:
"That was a communist explosion!"

Referring to Pattie Darrow, sitting in the corner of the room:
"That's Terry over there. Nobody likes her."
(Pattie said to Suzy, "I'm glad she didn't call me Pattie!")

"Did she say 'pickles?'"

"You have the most confusing family."

To Billy:
"You're going to kiss me on TV? We haven't done that in so long!"

Swinging fist into the air swiftly:
"Strike!"

Pat moves picture on try to the side:
"Mom, I moved the picture so I can see your smiling face."
"Whoop-dee-doo."

Suzy to Mom:
"You know what I haven't heard from you today? Not one request for chocolate."
"You may have missed it."

Right now, Mom is sipping her cup of decaf and watching, "It's Me or the Dog" on Animal Planet. It's a beautiful spring day in Boyne City. The snow is almost gone and the mud is beginning to dry up. We're having a nice morning. Hope you are too.