Nancy Shoemaker's Blog- At Lake Norman

Hoping For Better Days Ahead

nancyshoemaker — Sun, 22 Jan 2012 01:10:52 +0000

It has been a week today since the peg tube was inserted into Bob’s stomach. He is getting nutrition and may be getting stronger. He is not getting any better mentally. He keeps taking his gown or shirt off and getting out from under his covers. He seems to be hot all the time and occasionally will break out in a sweat. He feels cold to touch. He moves his arms and legs more than before and lets one leg hang off the bedside. I watch him to see what he is doing and I will see him lift his leg with his hands to get it back up on the bed. That indicates to me that he may be gaining some strength. Some times he mumbles incoherently and other times I can hear him very plainly praying. He will call my name from time to time and even pucker up for a kiss.

His blood sugar has run as high as 560. So far he has gotten only the fast acting insulin but the plan is to add a long acting insulin tonight. When its high the feeding flow is dropped to a slower speed. The highest rate of feeding flow was at 72 mls per hour. It has lower and raise several times. Now it has been raised from 30 mls per hour to 40 mls per hour. 30 mls is equal to one ounce so one ounce an hour seem like a small amount to me. Every few hours the nurses check to see if he is digesting the food fast enough and if not the pump is stopped to give him time to digest before more formula is pumped into his stomach.

Days like today when he doesn’t respond to me very much or mumbles a lot I am scared and worried.I think he may be in pain. He can have Tylenol but he may need something stronger. The nurse called the Doctor on call and she prescribed a stronger medicine which is combined with Tylenol. I am constantly on the verge of tears. I am always watching him breath and some times if he is having shallow breathing it scares me. I wish his blood pressure would be checked more often. When Mother’s care was taken over by Hospice I was given a little booklet to read to prepare me for her passing. I can’t help but remember some of those symptoms and think I am seeing them in Bob’s actions and condition. I get the recliner as close to his bed as I can so I can listen to him breath after I go to bed. I think I am going to make my self crazy. I need lots of prayers fo both of us.

Nancy Shoemaker 1/21/2012

The Peg Tube Feeding Saga Continues

nancyshoemaker — Wed, 18 Jan 2012 17:22:18 +0000

Bob has been getting peg tube feedings since Saturday night. He has had his ups and downs. The ups are consisting of obvious improvements of his mental state, staying awake more, responding to me and reading the message board that we write notes on for him to read. ( he doesn’t want to wear his hearing aid) Today he is insisting on getting up but he is still too weak to do that. He will reach out to me and chant” Get me up”. When he has something on his mind he will repeat it in a chant like phrase. I have read so much about brain surgery that I don’t remember where I read it but the chant is a side effect from the surgery or from one of the medication that he is taking. He is resting now but he was continually putting his legs over the side of the bed. That is an encouraging sign because last week before the tube placement he didn’t have the strength to lift his arms or move his legs without help. One of the downs is that the rate of the formula flow was greater than he could digest. Early yesterday morning the nurse had to stop the feeding and add Reglan to help in the digesting. Reglan is a drug that can have some severe side effects. After the oncologist talked with me I reluctantly agreed for him to take it. I am still watching him closely. When Mother was given that medication she had a reaction that caused he to shake and twitch violently for a week. The rate of formula has been cut in half and he seems to be doing all right. I hope Bob will gain more and more strength so we can go home. The fact that he has finished the radiation treatments for the Glioblastoma Brain tumor may also be a factor for his increase in mental and physical improvements.

Nancy Shoemaker 1/18/ 2012

We Made the Hard Decision Together

nancyshoemaker — Mon, 16 Jan 2012 20:15:35 +0000

Saturday morning Bob had a peg tube inserted into his stomach for feeding. It was a hard decision to make but after hearing Bob talking about wanting to go home, wanting to go home to play with Lilly, wanting to go to the mountain, going to hunt big red apples at an orchard made me think he was not ready to give up on life. I ask Bob in front of Dr. Rinedollar’s PA,if he wanted a peg tube put in his stomach. The PA ask if he wanted to go home and Bob answered yes to both questions. I have been told when a patient wishes to die they refuse food. Bob wants ice cream because he can taste sweet things and ice cream is easy for him to swallow. The only other food he would eat was mash potatoes but only 2 times. He like the ice cream because it is cold and soothes his throa.t He hate to swallow the pills and seems to get strangle on the on the water. If the nurses try to get him to take the pills in apple sauce it make him angry. He always says,”Don’t try to fool me!”

Bob ‘s weight was down to 135 pounds or less. The scale is on the bed so when he is weighed it also weighs the blankets and pillows . His voice was getting faint and he was too weak to sit up. He has not gotten any physical therapy. It took a couple more day before the procedure was scheduled for Saturday. He was sleeping almost all the time so we didn’t talk much those couple of days.

Since the procedure Bob’s voice has gotten stronger but he has not gotten stronger nor has he been awake as much as he had been a couple of weeks ago. I hope he will get some physical therapy. Earlier in the morning he said to get some exercise so I worked his legs by bending his knees and raising his legs up and day. I really want him to go home but until there is no need for an IV he won’t be able to that. He is tolerating the feedings well but his blood sugar is going up higher requiring more insulin,. The Doctors did not expect him to gain much strength with the feedings but I hope he will . Until today he hasn’t acknowledged me since the procedure but a little while ago just a while he was restless so I went to him and he patted me on the shoulder then ask me to scratch his back. I have hopes for more good signs from him. I just wish it had been done eariler before when he was stronger.

Another Encourging Day

nancyshoemaker — Tue, 10 Jan 2012 18:08:14 +0000

Sunday was a very good day! Bob was alert and asking to go to the mountains. He also wanted to go home to play with the little dog. He ask me to put on his pants,shirt, and shoes. I put his p.j.s bottoms on and a wool shirt and his shoes and socks. One of the CNAs helped me to get him into a wheel chair. I pushed him around the unit for a little bit, then outside for a little bit then he ask me to get the car. I explained that he was not strong enough to get in the car. Then he said” OK, let’s go back inside.” He sat up in the wheel chair for an hour. When we put him back in bed he was so tired that he immediately went to sleep.

I spoke with Dr. Kassman about placing a peg tube in his stomach. He explained some of the pros and cons for doing the procedure and said to take a few days to decide what I wanted to do. During one of the days when Bob was alert I ask him if he would let the Doctors do the peg tube so I could take him home. He replied,”I guess I’m going to have to.

Maybe he will have more days that he will want to get up since he has had the last radiation treatment. Today his cousin, Aldean, came and visited. He was alert and knew her. He had his hearing aid in his ear so he talked a little bit before his medicine made him sleepy.

Praying for Encourging Days

nancyshoemaker — Sat, 07 Jan 2012 00:03:24 +0000

We came into the skilled nursing department of Iredell Memorial Hospital on December the 21st. we had been on the fourth floor of the hospital since being admitted on December , 13. Bob was admitted to receive fluids via IV because he was so dehydrated. His appetite has been on the decline ever since the second stroke he had on February 28, 2011. When we were admitted to the skilled nursing floor we were hoping that he would get physical therapy to gain strength so I would be able to manage him at home. He is so weak now he can not sit on the side of the bed without me sitting beside him to support his body, and that is only for a minute or so. He is eating less ice cream every day. My hope of taking him home sometimes seems unrealistic.

Today has been a lot better than yesterday. He ate a little more ice cream today. He even smiled for me to take his photo. Last night before bedtime I ask for him to have Tylenol to help him rest. He rested well last night and was more alert today. He hasn’t been as grumpy today either. It is amazing what small blessing for which I find myself giving thanks. I think the small amount of morphine he had night before last really knocked him out. I think if Tylenol helps him as much as it did last night I will hold off on the morphine as long as possible.

Joncie came this morning and she was pleased to find Bob awake and alert. She was so discouraged last night when she visited and sit down beside him on his bed. She patted him on the back and felt how much weight he had lost. It broke her heart to realize how frail he had become. It seems like each day I encounter either a tearful situation or unexpectedly encouraging situation. I hope and pray each day I can see some improvement or some small thing for being encouraged.

A Difficult Decision to Make

nancyshoemaker — Fri, 06 Jan 2012 00:30:59 +0000

Bob continues to lose weight. Last weight I was told about was at 140 pounds. He was probably a teenager when he was at that weight. I just learned Tuesday, the 4th of January, that Bob has only 5 more radiation treatments left to take. When we left Baptist Hospital November we were told he would be scheduled 5 treatments a week for 6 weeks. I ask Dr. Harr, the radiation Dr., why the changes and she explainedthat it was the plan that Baptist Hospital sent for her to follow. When I ask why it was shortened she said he was given a little higher dosage of radiation but not twice as much because a small amount more each time would be equal to a 6 week plan. Today is Thursday so one more treatment this week and 2 treatments next week. As it happens, Tuesday will be the 21st day in the skilled nursing unit. Our supplemental insurance may not pay anything after 21 days. I have been asking to have a stomach peg placed in his side so he could get enough nourishment to get strong enough for physical therapy. With out strength to get around I won’t be able to bring him home. I have so many things that I worry about.
Dr Kassman came by to talk to me about the peg tube. Hs was not very encouraging. I have hopes of Bob regaining strength but Dr. Kassman does not feel that would be the case. He did say that if I made the decision to go ahead with it he would schedule the procedure. I guess we have some serious thinking to do.

A Really Bad Day Fighting Glioblastoma

nancyshoemaker — Thu, 29 Dec 2011 04:17:12 +0000

Today has been our most difficult day yet. Yesterday The Doctors agreed to place a feeding tube in Bob’s nose to try to get nourishment to him. He was fighting it all the while it was being done and his hands were tied down to try to keep him from pulling it out. Last night as he was receiving feeding I had high hopes. This morning my hopes were dashed. He was taken to get a radiation treadment this morning. I was so sleepy that I went to sleep after he came back from the treatment. I was awakened when he called out in pain. He had pulled the tube out of his nose. Apparently his hands had not been tied as short as necessary to keep him from reaching his nose. The Doctor would not have it replaced. Bob has been uncomfortable all day even with pain medicine. I am really having a hard time dealing with things today.
Nancy Shoemaker

A Visit From Miss Lilly

nancyshoemaker — Tue, 27 Dec 2011 19:18:44 +0000

The Christmas celebration is over for the year of 2011. Bob and I spent the holiday at the Iredell Memorial hospital skilled nursing unit. Things were low-keyed with visits from our family members and a few friends.
Bob spends most of the time sleeping. I feel like the medicine that he is given causes him to be drowsy all the time. He still won’t eat anything but ice cream and not as much as before. I have so many questions about this disease. I am constantly researching on the internet. Sometimes I find an answer but sometimes that brings on another question. I talk to the doctors and they try to give me the answers but nobody has a crystal ball. Most of the time I spend the day here at the hospital on the internet and sleeping as much as I can during the night. Bob calls out a lot, day and night, and I try to do what I can to help him get comfortable. When I ask him if he hurts he always says he doesn’t. He always fights us when we try to give him medicine and he doesn’t like to get the radiations treatments.

Some times he is rude to the nurses and also to me. He is really quite grouchy. I don’t think he is awake enough to know what he is saying. It embarrass me when he say we are dumb or to go away. The staff doesn’t seem to mind his rude remarks. I guess that is just part of the disease. It seems that every one is concerned about making sure I am eating enough, but I am afraid I am eating too much. I can’t afford to buy bigger clothes.
Yesterday he kept saying that the dog was dying and the cat was dying . We don’t have a cat. I went home and got the dog for him to see but he just rubbed her head and said ” Hey Miss Lilly” then he went back to sleep. The dog was glad to see him and wanted to get in the bed with him. She likes him best. I hurried her back out to the car before she began to bark. I took her back home and she was happy to get back to the house.

Wishing a Merry Christmas to All

nancyshoemaker — Fri, 23 Dec 2011 20:31:26 +0000

We are in the skilled nursing facility at Iredell Memorial Hospital. When I say we, it means that, for the most part, I am, also, here with Bob for 24 hours each day. The daily schedule starts at 7:00 am with checking vitals, to bath , to taking pills, insulin shots, several times a day, and having an IV for fluids running 24 hours. Three meal a day is brought for him but there is seldom anything he will eat. The food is good but he will only consume ice cream. I get him up into a chair at least one time a day.(usually against his will) He has not been very cooperative with the Physical therapist and they can’t make him do any thing he doesn’t want to do, but I can try harder to get him to . He is still sleepy all the time. I have been told that the siezure medicine causes that. His blood sugar is running high but the steroid he is taking is a factor in that and the only thing he will eat is ice cream. He calls for ice cream at any time of the day (and night)and I try to make sure some is available for him If he doesn’t soon eat I am afraid he won’t live long enough to battle the cancer.

Two days till Christmas! Everybody seems to be in a hurry. I guess the excitement of the Christmas season has everyone in a festive mood. I still have no plans for the holidays except being here with Bob in the unit. I am enjoying all the decoration and I like seeing everyone smiling and happy, while wishing their coworkers and the patients a Merry Christmas. So if I do not blog again before Christmas I would like to wish Everyone a Merry Christmas!

Rehab to Gain Strenght After Brain Surgery

nancyshoemaker — Tue, 20 Dec 2011 16:32:03 +0000

Bob has been through the wringer already this morning. It is just 9:30 am and he has had an x-ray, blood test, physical therapy, and still to have a radiation treatment to take and a bath to be given. The nurse brought medicines and that is always a battle. He still says it hurts to swallow pills. I had to hold his arm down while the blood was drawn for a fasting blood test. He was telling me very loudly that I was breaking his arm.

This morning he decided that he would eat ice cream but only a few bitest Last night he asked for a tomato sandwich with mayo,bologna, and cheese. I went to Wal-Mart and got the stuff to make one. He said he only wanted a bite. I cut it in fourths and he eat most of a fourth.

Yesterday I asked Dr Gavini what was shown on the x-ray that was taken on Friday. She told me that he had some fluid in his lungs and she had already cut back the rate of fluids that are going in. I don’t know what the x-ray was for that was ordered this morning . The blood test was checking his potassium levels.

The next step will be possibly, a move to rehab. I walked down to that wing yesterday to scope things out. One thing that was obvious, the rooms are quite small. I don’t think there are acustom having a spouse staying there all the time.

Nancy Shoemaker