Day 2

Thursday

Hmm...what to say about today. The plan was to have a peg vent placed so that the fluid build up in her abdomen could be released. This was scheduled for 12:30. Anyone familiar with hospital time will know that 12:30 quickly turned into 3:30. Prior to the surgery she had to be given plasma. During plasma time, she was not allowed any pain meds...suffice it to say, she was a little cranky. Plus, she was cranky because she is sick of having to throw up this fluid! Well, as if things can ever go right for Marj, the surgery did not happen today. When they got her down there, Dr. Marj, said to the doctors, "Did we check my fluid levels?" Well, go figure...no they didn't and because there was such a fluid build-up they were unable to do the procedure. So, back upstairs she went with a vomit bucket in tow. Obviously, this angered her, as she is sick of dealing with this throwing up.

During the procedure, Martha, Laura, and I headed back to "the home" where we are staying, took naps and showered. "The home" is the Charter House where my grandma lives. We will be staying in her apartment, as she is in Hospice, Palliative, or Comfort Care (you pick which word you like best...I prefer Palliative because it makes me think that sure I can pallet what is going on, but its not really comfortable). Anyway, part of my grandma's monthly bill to live in the Charter House includes meals on the top floor. We had five tickets that had to be used before the end of the month, so Martha, Laura, Marsha, Mary, and I enjoyed dinner together. It was a nice time to tell stories about both grandma and mom, to catch up, and try to alleviate some stress. After dinner we headed back to the hospital. When we got there Marj was a little dejected from the procedure not happening and needing to throw up. It was hard to watch her be uncomfortable for like 45 mins just waiting for the throw up that she really has no control over, to happen. Understanding and noting her distress the nurses recommended placing a NG tube. I guess this was a thought previously, but they were hoping to have the PEG vent placed, so it was kind of passed over. However, once the vent didn't happen they broached it again. My mom agreed this time.

NG tube placement- This was definitely a highlight of the day. Not only did this provide relief to Marj, but it provided comic relief for us. My mom has many male nurses, which she enjoys giving a hard time. To place the NG tube, two of her male nurses came in together. There was quite a bit ribbing had by all. At one point, the nurse Jeff asked her if she was feeling relaxed. She couldn't believe they had snuck the meds in without her knowing. She kept saying, "No, I don't feel a thing." About 30 seconds after this we look over at her and she has her vomit bucket on her head and is saying, "I have my party hat on!" "Look at me are we ready to party?!" She was talking to Issac, the nurse and realized that Jeff, the nurse did not know it was party time. She said, "Hey, hey (of course she couldn't remember his name) I have my party hat on and are we ready to party?" At this point, they obviously decided she was good to go. They then placed the tube, which she complained about a little, but for the most part she was asleep. Once they turned on the suction, 800ml came out in about 30seconds! I must say it was quite amazing. We took a picture, but will spare you all. We left her sleeping very soundly, which will hopefully continue through the night.

Other than all that excitement, she was pretty tired today from all of the excitement of the daughters arrival and all of the phone calls yesterday. She says she enjoys the phone calls, but they definitely take a lot out of her. We of course want to thank you for all the kind words, thoughts, calls, flowers, and everything else. It helps immensely to know how many of you are out there thinking of us and would do anything for us!

After writing all of this today, I realized that I never even mentioned my grandma. I guess it is because there really hadn't been anything to update. However, in the last two days her health has declined. She is not responding to known voices and it hurts her to be touched, so she will not hold hands anymore. I guess they believe that she may have gout. Like many times before they think it will be soon, so we will see.

Oh...one more thing. We asked to meet with the social worker today that has been on my mom's case. They said that she won't be around for a few days, as she has been admitted to the hospital herself. I guess the social worker, who belongs to a bike club, had a bike accident and has broken a bone or two. So, new social worker has been appointed and we met her for a short time today. I believe that anyone that comes in contact with these Hayles ladies may be cursed.

Plan for tomorrow. Social Worker visit, tube placed, Marj's niece, my cousin Josie will be visiting, as well as my dad. It looks like family friends from North Dakota will be here early Saturday morning. Whew...guess that is all I got!

Day one

Wednesday, September 29th.

Marj and her sisters met with doctors to begin planning her final days. Sarah, Martha and Laura headed to Minnesota. Marj fielded many calls of shock and despair. She noted, "Everyone is crying." Seriously...that's Marj for you! She also noted that she knew she had friends, but she never realized how many people were in her life. She was obviously touched upon realizing this.

Sarah, Martha, and Laura arrived around 5 pm in the evening. Marj was up and alert...looked as if she was just recovering from surgery. She was in good spirits, making jokes, flirting with her cute nurses, and obviously excited to see her daughters. There is not much to report from Wednesday, as there were no more procedures done and she was resting comfortably.

She is currently hooked up to an IV, which is used only if meds are needed for things like nausea and is able to administer strong pain medication every six minutes by pushing a button. As part of what they call, Palliative Care, Comfort Care, of Hospice, they no longer check vitals and are working to disconnect her completely. This will include a pain patch being placed, so no longer attached nor will she have to push the button. They were planning for placement sometime tomorrow, Thursday. Her food intake is only liquids, broth, water, ice chips, jello, Popsicles, etc. Currently, she is unable to pass anything below, so as her belly fills up the only place for it to go is back out through her mouth. So, she will vomit a couple times a day to alleviate the pain of her belly filling with liquids. She is extremely annoyed by this feeling and will be receiving a tube in her belly to allow it to pass out of the tube. That procedure is scheduled for tomorrow.

A little background knowledge

Marjorie Jean Hayles was born January 20, 1950, in St. Mary's Hospital, to Alvin and Marliee Hayles in Rochester, Minnesota. She enjoyed a fun-filled childhood in Rochester with her two sisters, Mary, the oldest and Marsha, the youngest. Marjorie graduated from Mayo High School 1968. She went to the University of Minnesota, where she got her degree in Parks and Recreation (some of you may have heard that she went to school with Dave Winfield-if you know who that is). Marj married Joe Pingatore at the Plumber House in Rochester, Minnesota, in 1975. From that marriage she had three daughters, Sarah, Martha, and Laura. Interestingly, Sarah was born in St. Mary's Hospital as well. Marj spent the first part of her children's lives as a stay at home mom and watching a few other children. When the children had grown older and after a divorce, Marj went back to school to get her degree in school psychology. She graduated with a masters+hours (don't forget those added hours ;-)) from the University of River Falls in Wisconsin.
Marj moved between Rochester and St. Paul a couple times in her life, but made a major move to Arizona in the fall of 1993, to pursue her career as a school psychologist. She has worked for the Apache Junction School District since this move.

Health Background-
Marj was diagnosed with breast cancer November of 2008. She had a mastectomy in January of 2009. She had two surgeries after the mastectomy, one being a reconstruction and the other to remove a build up of scar tissue. She did not pursue any further treatment, but was given a clean bill of health, cancer free! Marj did begin to have some stomach issues in April or May of 2010. These pains came and went and were checked out by physicians. She continued to be given a clean bill of health and was told to change her diet. Some days were better than others, but she did change her eating habits.

Now...how we got here.

Marilee Hayles, Marj's mother, began to decline in health in August of 2010. Marj was given the news that her mother did not have much longer to live and that she needed to return to Rochester, Minnesota to be with her. Marj left Arizona on September 11. Upon arrival in Minnesota, it was not long before her mother's health quickly declined and was given days to live. The Hayles' sisters came together to be with their mother. While here in Minnesota, Marj's stomach pains continued and hit a head on Sunday, September 19. Her sisters commanded her to the hospital and off they went. You can note here the reason St. Mary's Hospital was noted and important above because that is where she went. So, upon entering the emergency room at St. Mary's Hospital, they had her back in their care before her sister could even park the car. Marj then spent the next week and a day going through test after test after test. They finally decided to do exploratory surgery and was scheduled for Tuesday, September 28. The surgery was expected to last anywhere from 2-4 hours depending on what they found. The surgery took about an hour and a half. Hearing the surgery only took an hour and half did cause all to pause, but not to worry. In hindsight, as her sister said, "We should have known that after a week and a half of being in a world renowned medical facility, with no answers, that it wasn't going to be as simple as a blockage in her colon!" And boy was she right!!
On Tuesday afternoon with her sister Marsha by her side, Marj was given the news that she had terminal cancer. During the surgery, the reason it took such a short time was because it was very easy to see that cancer was everywhere in her gut (as she calls it) and that there was not any salvageable tissues. Marsha said, "I was shocked by the news, but was inspired by her remarkable dignity and strength." Marj noted that she felt like there was something major wrong and did not feel surprised by the news. That afternoon the doctors said she was looking at 4-6months.
Tuesday overnight- As the devastating news was making its rounds and working to sink in, further devastating news was given. Through the night, Marj was unable to keep her blood pressure up. She was told that she needed to go to the ICU. Marj's sister received a phone call saying she was off to the ICU. A half hour later, she received another phone call that Marj was refusing ICU and any further measures. It was determined that if it was internal bleeding they would not be able to fix it and if she went into the ICU it would just be medications that would only prolong the inevitable. A phone call was quickly made to her daughters, as directed by the doctor, for them to come as quickly as possible because we were looking at days. It was thought that the surgery damaged her kidneys. A dnr was enacted.

Whew...quite a lengthy background. Everyone was fooled into reading this based on the title saying, "a little background knowledge."