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Tag Archives: health crisis

New Year’s Goals, Wishes, Changes, etc.

01 Thursday Jan 2015

Posted by Ann Kilter in Goals

≈ 3 Comments

Tags

aspergers syndrome, autism, goals, health crisis, New Year

2014 has been a rough year, or at least the last third has been a rough year due to Ralph’s health issues.

But here we are in 2015. I am not going to make any resolutions, but here are some wishes, changes, goals, and events that I would like to see for this year.

1) Ralph to gain 10 good pounds. Not due to edema. Muscle and fat would be good.

2) Direction from all of his doctors together regarding effective measures to restore his health.

3) I would like to simplify my life.

4) I want to get rid of more stuff. Last year I took several trunk loads of stuff to Goodwill. A large, old four bedroom house with walk-in closets and a full basement can hold a lot of stuff. I am not a hoarder, just a forgetter. Out of sight, out of mind they say…and there is plenty of room here to put things out of sight.

5) I would like to see Mary get succeed at a full-time job and move toward independence. Maybe get her own apartment.

6) I would like to move to a smaller place, with fewer maintenance needs and outdoor chores. (Part of simplifying my life).

7) Patty to get into grad school and move away from home.

8) Patty to get her driver’s license, and help me with some driving chores this year before she moves away.

9) Will is in the process of trying to buy a house. I would like to see him do that.

10) Do more things together with Ralph. The last few years, as the kids graduated from college, I’ve had more “free time.” I filled up that time with choir, our local writing group, my scrapbooking group, my quilting group, and other activities. Ralph’s health problems have brought a screeching halt to all of this. I think/hope he is starting to feel better. I want to be very careful about what I add back in. I want to include something that is “us” time on a regular basis. And I did go to scrapbooking and quilting last month. Those are once a month meetings. Writing was twice a month, and choir is a big commitment (once a week and some Saturday rehearsals, plus Sunday). I need some ideas for “us” time.

What do you hope to see for 2015?

OLYMPUS DIGITAL CAMERA

Thanksgiving Respite

01 Monday Dec 2014

Posted by Ann Kilter in Health Crisis

≈ 1 Comment

Tags

asperger's, autism, health crisis, Love in action, thankful, thanksgiving

Thanksgiving. Time to give thanks to the Lord for the loved ones in my life. Time to catch our breath after a turbulent autumn for our family.

Ralph has suffered a series of health crises, been to the emergency room three times, admitted to the hospital twice from the emergency room. His weight has ranged from 136 to 172, due in part to what we now know is heart disease and pulmonary hypertension. Many questions remain, but for now he is recovering from major surgery for a small bowel resection and colon resection as the result of a tumor, and a stay in the hospital for pneumonia three weeks later. But he is home now, gaining strength before the next series of doctor appointments and tests. Thank you Lord.

I’ve had to do many things that used to be “his jobs.” Shoveling snow. Changing light bulbs and clocks. Cooking the Turkey for Thanksgiving. Cooking all of the suppers (he cooked about half of them). I was successful with some of his jobs.

But I was unable to start the snow blower. We’ve had already 30 inches of snow in November, and the local weatherman predicted another foot of snow. I hated winter at that point. Probably the first thing that made me cry besides Ralph’s emergency hospital stays. A man from our church came and used his snow blower on our driveway and sidewalk. A blessing. (The additional foot of snow never materialized, but there was already over a foot of snow on Ralph’s car at that point.)

The turkey was a bust  at the first attempt. Under Ralph’s instruction, I stuffed the turkey, slathered it with butter, and put it in the oven. I turned the oven to 335. But instead of turning on the timer, I pressed “Time Start” for four hours. By the time I realized my mistake, it was too late. With the advice of the Butterball turkey hotline, I threw it away. Instead of turkey we had beef and noodles with onions and mushrooms. That evening, I went to the grocery store with Will and Patty…and fresh turkeys were on sale for 75% off. The next effort was successful. We had our Thanksgiving dinner on Friday. Still thankful. Still smiling. Still delicious, even though I made the turkey.

Will came home for Thanksgiving and bought us a Christmas tree. Our old giant tree had seen better days. Last Christmas, we used duct tape to hold it together. He knows how important Christmas is to Ralph. Ralph is the one who puts the tree up, coaxes the rest of us to help. Sets up his villages around the dining room. Not sure if the village will get set up this year. But Will set up the tree, gave Ralph some of the branches to unfold, wrapped the lights around the new tree, and he and I put the ornaments on the tree. He placed it where Ralph could see it from the couch he is occupying for the time being. Will loves Christmas, too. Just like his Dad.

Thanksgiving blessings to you all.

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“Rejoice always, pray without ceasing, give thanks in every circumstance, for this is the will of God in Christ Jesus.” I Thessalonians 5:16-18, the Bible

The Good News and the Not So Good News

29 Saturday Nov 2014

Posted by Ann Kilter in Health Crisis

≈ 11 Comments

Tags

anxiety, asperger's, autism, health crisis, not knowing

Ralph was in the hospital for six days after his bowel resection surgery. I spent nearly all my free time at the hospital with him. He had some minor complications, but after six days, they discharged him (a day earlier than predicted).

After his discharge, I spent all of my free time taking care of him. Although he was a model patient, I found myself impatient, grumbling inwardly, and sometimes bewildered and frustrated at my own negative attitude. And tired. I had to help him with everything. If he dropped something, he couldn’t pick it up. He couldn’t get his own food. He needed help with the shower and getting dressed. But he had survived, and I was grateful that he was home with us.

Still, the specter of cancer hung over our lives. At the hospital, we asked if they had the results of the biopsy. Probably Monday, they said. On Tuesday, the day of discharge, we asked again. It can take up to a week, they said. So we went home, not knowing, although the surgeon, Dr. Hyatt, had told us bluntly that it was cancer.

On Friday, Ralph called the surgeon’s office again about the biopsy. “The tumor was benign,” the nurse said. “Well, what was the tumor?” “I don’t know, I don’t have my notes with me.”

The tumor was benign. Good news! Wonderful news! Now all we had to worry about was recovery. Ralph still felt like he had been run over by a truck, but at least it wasn’t cancer.

About three weeks into recovery, Ralph woke me up at 4:00 a.m. “I can’t breathe when I am laying down,” he said. “When I get up and walk around, it’s better. Maybe I have a cold. I can’t breathe through my nose when I am laying down.”

It’s probably a cold, I thought, and went back to sleep for a few hours. He got up and sat in his chair.

When I got up, we began discussing his symptoms again. I decided that I was going to go to the store and get some medicine for his cold symptoms, instead of going to church. Then he said, “Would you put some more pillows behind my back so that I can breathe better?”

“I think we should call the doctor.”

“The doctor’s office is closed.”

“They have an answering service. There is always a doctor on call. I think we need some advice.”

“Okay.”

I told the answering service Ralph was having trouble breathing through his nose, especially when lying down, and we thought it was a cold, but we weren’t sure. She said she would have a nurse call us back.

The nurse called us back, and I put the phone on speaker so Ralph could take part in the conversation.

“Ralph is having trouble breathing through his nose when he lies down. We think it’s a cold, but we’re not sure. When lies down, he can’t stand it. He gets up gasping. He says it’s better when he walks around,” I said. “I think you should know that he is recovering from major surgery. He had small bowel resection three weeks ago.”

“You should call 911 and have Ralph taken to the hospital by ambulance,” said the nurse.

“My wife can take me to the hospital. It’s only four miles away. It would take us 10 minutes,” said Ralph.

“With your history of recent surgery, I am concerned that you may have an embolism in the lung. If your wife takes you to the hospital and you have problems, she won’t be able to help you,” said the nurse. “You need to call 911 and go to the hospital. Besides, if you go the hospital in the ambulance, they take you right to a room. You won’t have to check in.”

“Okay.”

I called 911. The EMTs arrived about the same time as the ambulance. They started asking questions, and Ralph’s condition didn’t seem serious to them. They looked at each other as if to say…why are we here. I wondered if we were wasting money on a non-emergency. They put took his vitals, and got him ready for the ambulance.

They asked me if I wanted to ride in the ambulance. “No,” I said, “I’ll take my car and follow you.” I wanted to be able to drive myself to the hospital and home from the hospital.  I thought, again, that this was going to be a visit to the emergency room, a discharge from there, and back home again. If I rode in the ambulance, I wouldn’t have a way to get him home. That is, I would have to depend on other people to help me.

I took my crochet bag, my Kindle, and this time, some Kleenex.

I followed the ambulance to the hospital. They took him in with no apparent sense of urgency. After the initial evaluation, hook up to an IV, blood pressure cuff, oxygen saturation monitor, and oxygen, they left us alone for a few minutes. Ralph looked at me, “I started breathing better in the ambulance. My nose isn’t stuffed any more.” “Maybe it’s the oxygen,” I said.

Doctors and nurses came in and out. Listened to his heart, his lungs, took his blood, asked him again and again to give his name and his date of birth. Then they scanned his wrist, and whatever product they were giving to him or taking from him.

About an hour into the visit, Ralph began having trouble breathing. “I have to sit up,” he said. “I can’t breathe.” I helped him sit up, and pushed the call light. I wanted to rush out and call for help, but I had all I could do to help him sit up so he could breathe. A nurse came running in. (Those monitors are more effective than a call button). He turned up the oxygen, and helped Ralph sit up and helped him calm down. After Ralph was able to breathe more comfortably, they moved the incline of the bed higher. I was glad then, that we had called an ambulance. I would not have been able to handle that.

A parade of doctors, nurses, a respiratory therapist came in and out of the room. This visit is getting longer, I thought. Every doctor who came in looked at his legs. “How long have your legs been swollen like this?” “His legs are normally somewhat swollen,” I said, “but it’s been getting worse since he came home from the hospital.”

Finally, one of the doctors said, “We are going to admit you. You have pneumonia deep in your lungs.”

Ralph was in the hospital this time for six more days. He saw many different kinds of doctors during this visit: family medicine, gastroenterologists, hematologists, urologists, and hospitalists. He had very strong antibiotics for his pneumonia, and he was dependent on oxygen for five days. Ralph said they told him they were trying to figure out what was going on with him. He had an echo-cardiogram the second day. His hemoglobin dropped during his hospital stay. He had a urethral stricture, for which he had surgery while in the hospital.

On the day he was discharged, he received six bottles of medicine and vitamins. But no answers. Also, he would receive at-home visits from nurses, physical therapy, and occupational therapy. They have been very helpful, and it has given me some peace of mind that we are getting help with his recovery.

About a week later, I took Ralph to our primary care physician, Dr. Scott. At that visit, he told us that the echo-cardiogram had showed pulmonary hypertension and cardiomyopathy. On the list also were essential thrombocythemia (a preexisting condition), hypertension (this has developed in the last year), anemia, chronic fatigue syndrome, congestive heart failure, and stasis ulcer (one of his old leg ulcers opened back up due to the extreme edema while in the hospital). Ralph has a visit to a cardiologist, bone marrow biopsy, sleep study, and other tests in his future. We don’t know the level of disease, but I do know the Internet is not a good place for me to dwell. We’ll wait for additional test results and professional opinions.

Cancer gets the bad press, but it is not always the worst of news. This may be worse. But we don’t know.

ambulance

Spinning Out of My Control

27 Thursday Nov 2014

Posted by Ann Kilter in Health Crisis

≈ 4 Comments

Tags

asperger's, autism, cancer, distress, health crisis, tumor

Cheryl the nurse continued to pepper Ralph with questions.

Then she pulled some papers out of a drawer underneath her laptop on her computer stand. “Can you tell me your name and birthdate?”

“Ralph Kilter. October 4, 1951.” He told me later that they asked him this question dozens of times.

Then Cheryl read off the description of the surgery, its risks, up to and including death. She read off the HIPAA permissions, the insurance permissions, the responsibility to pay if our insurance didn’t pay for the procedures. She then gave him the papers to sign, and he agreed to have the procedure done, risks and all. After everything was signed, she gave him Laudanum. Ralph said later that he didn’t remember signing anything.

I was amazed at the amount of technology. Computer lap tops on wheeled stands. Orders being sent by Wi-fi. Scanners. Every procedure, every piece of equipment, every medicine, every IV bag, was scanned in…like grocery items on a conveyor belt. After scanning in the product, they would scan Ralph’s wrist band. It struck me as unreal.

But I also made use of Technology to keep our friends and family informed. With my smart phone, I posted updates on Facebook. I texted my sister, brothers, and parents. Patty and I used Facebook to message back and forth. Most of my communication to others was silent.

“Ralph, I’m going to have to insert a nasal gastro tube up your nose and down into your stomach. That will relieve some of the pressure in your stomach. It won’t be comfortable, but we have to do it to prepare for the surgery,” said Cheryl. She handed him a Styrofoam cup with a straw filled with water. “If you drink water while I am doing this, it will be easier.”

When she began inserting the tube up through his nose, he cried out. “I know,” said Cheryl, “keep drinking the water. That will help.” But it didn’t help. The tube kept curling up in his mouth. Another nurse came in to help, then the charge nurse.

Why can’t they just leave him alone? Why do they have to do this to him? Couldn’t they do something else less invasive?

Finally, a doctor came in with a bottle of sore throat spray. “I was wondering when someone might think of that,” I said. When I had had surgeries many years earlier, a nurse would spray my hand with a topical anesthetic to get the IVs in.

I had to leave the room for the last attempt. Cheryl was waiting outside the room as well, with her laptop on her stand. “I’d have to wait outside, too, if I were you.”

The sore throat spray did the trick though. Ralph said the doctor sprayed his throat, and also the end of the tube. He would end up with that tube in his nose for two days after the surgery.

Then we waited. Pastor Smith came into the room about two o’clock. He prayed with Ralph. And he spent the next hour chit chatting with me. We talked about the upcoming surgery, TV antenna reception, and the casserole his wife was making for supper. Talking about the mundane helped, as we waited for surgery.

“Is anyone going to be waiting with you in the waiting room during the surgery? What about your girls?” he asked.

“Well, Mary is at the mission working, and Patty is at home. But neither one of them can drive.”

“I can go and get them and bring them to the hospital,” he said.

“That would help.” So I messaged Patty on Facebook, and I called Mary. I knew she kept her phone in her purse. “Mary, your Dad is having surgery. Pastor Smith is going to come and pick you up and bring you to the hospital. Do you remember what Pastor Smith looks like?” “Yes,” she said. “What kind and color is your car?” I said to Pastor Smith. “It’s a white mini-van.” “Mary he drives a white mini-van. Wait until you see his car before you come out of the building.”

Pastor Smith left to get the girls.

The assistants came to take Ralph down to surgery from his room. They walked very fast and I struggled to keep up as they pushed his bed down several hallways and into two sets of elevators down to the surgery section. In pre-op, several people introduced themselves: the anesthesiologist, the OR nurse, the surgery assistant, and Dr. Hyatt, among others.

While we were waiting in pre-op, my sister-in-law, Julia texted me to let me know that she was bringing my 79-year-old mother to wait with me in the surgery waiting room, but they needed directions to the hospital. A drive of 130 miles. As I described told Pastor Smith later, I always think of Julia as a Proverbs 31 woman.

They took Ralph back to the operating room, and a PCA showed me the way the waiting room, showed me where to get coffee or water, and gave me instructions regarding the check-in/check-out desk. I had been given a sheet of paper with a code number for Ralph. The monitor in the waiting room would inform me when Ralph was in the operating room and when he was in recovery.

I sat down at a table in the waiting room, alone. I felt like crying, but I couldn’t. There were other people in the waiting room. After a few minutes of looking at the wall next to me, I pulled my Kindle out of my purse and tried to read it. I couldn’t.

Pastor Smith arrived with the girls about ten minutes after I sat down. Patty hugged me before sitting down. I told them their dad was in surgery now. Pastor Smith started talking about mundane stuff…the girls’ jobs, their brother, Will. I will tell you that talking about ordinary stuff in the midst of duress does help.

My phone buzzed. “We here where r u?” Julia messaged. I went to the desk to ask where I was, but no one was there. So I walked out the door on the other end of the waiting room to find someone to ask. As I looked around, the elevator pinged and out they walked, Mom with her rolling walker. She smiled at me and gave me a hug, and then Julia did. We walked into the waiting room and I introduced them. Julia can talk a mile a minute, but it was great. Most of the conversation took place between Julia, Pastor Smith, and Patty; some about the surgery and the day I had had, but mostly about ordinary things.

After about 90 minutes, Dr. Hyatt came to the waiting room and introduced himself to our table. “Well, the surgery went well,” he said. “We removed a large tumor, resectioned the small bowel, and we also cut it out of the transverse colon and sewed that up. The tumor is most likely some sort of cancer, so we sent it and some lymph nodes to be biopsied. I’m sorry.” He looked at all of us. He seemed surprised that we didn’t seem that shocked at his announcement.

“How long will he be in the hospital,” I asked.

“At least a week.” Then he left.

We looked at each other. Patty and I were not shocked. Ralph had been progressively weaker and fatigued over the past couple of years. He had lost weight, and we had urged him to have physicals, and discuss his weight loss with his doctors. So cancer was not completely unexpected. Upsetting, yes.

A nurse came out another door from recovery, and suggested that we go up to Ralph’s room and wait for him there, so we found our way back to his room.

We talked for a little while, then they rolled Ralph back to his room on his bed.

“How are you doing?”

“Rotten.”

“Dr. Hyatt said the surgery went well. He also said that you would be in the hospital for at least a week.” Ralph nodded. He looked at both girls, “Girls, you need to take out the garbage.” Still responsible, still in charge.

smarttrack240

I Was Supposed to be Strong

13 Thursday Nov 2014

Posted by Ann Kilter in Health Crisis

≈ 4 Comments

Tags

asperger's, autism, health crisis

We arrived at Ralph’s hospital room. I settled on a chair near the window, about five feet from his bed. An observer. Shortly after arriving, the nurse came in. “My name is Cheryl and I am your nurse today. Would you give me your name and birth date?”

“Ralph Kilter. October 4, 1951,” he said, after a few minutes. Then a wave a pain struck.  She waited till it passed.  “Feeling poorly, huh?” He nodded.

The surgeon, bald with fringes of white on each side, walked in, followed by four younger doctors/interns.

“Hello,” he said, “My name is Dr. Hyatt. You are Ralph Kilter?” Ralph nodded.

Dr. Hyatt turned to me and extended his hand, “And you are?”

“Ann, his wife.”

“Sorry to meet you under these circumstances.” He looked at me and then at Ralph. “We found a mass or tumor on CT. That is the source of all this trouble.” He paused as Ralph grimaced in pain, arching his neck. “You are going to have to have surgery this afternoon. We’re going to do an exploratory laparotomy and get that thing out of there. We’ll probably need to resection your small bowel. That will make this pain go away.”

“He needs more pain medicine.” I said. The doctor started, but stopped himself from responding. I knew that Ralph wasn’t going to get any more pain medication at this point. “See you this afternoon,” he said to Rick, then walked out the door, followed by his team.

The nurse then turned to Ralph, “I have a lot of questions for you. But first, would you like a flu shot?”

“I’m scheduled to see my doctor on Tuesday. I’m supposed to get a flu shot at that appointment.”

“But you could get a flu shot now and it would be done,” she said, smiling at Ralph.

“You should get the flu shot now. I don’t think you’re going to keep that appointment.” I had a hunch he was not going to be at this appointment on Tuesday. I had had a couple of exploratory laparotomies several years ago, and had been in the hospital for more than a week each time.

“Okay,” he said, giving into our ganging up on him.

I found myself tearing up. I have this image in my head of people being strong for their sick ones. Comforting them. Calm. Saying just the right thing in the moment of crisis.

I wasn’t that person, the one who remained calm through a storm. I was always the one who turned pale during minor emergencies with the kids. The nurses would ask if I was alright and needed to leave the room. Ralph was the calm one, the strong one.

How was my autistic daughter handling this? How about Patty? Patty and I had been texting back and forth, but I was afraid she was freaking out at home. Yet, I couldn’t call her and discuss my fears regarding Ralph in front of Ralph, I didn’t want to upset him any more than he was already.

I couldn’t help my tears, my fears. I found myself scared, alone, not able to be the comfort to Ralph that I felt I should be. And why didn’t this stupid hospital have any Kleenex…anywhere?

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