Category: Near Death Journey

Guest Writer

There is so much that happened in that first week when the family and I were trying to grasp what Dana was going through. When I re-read my notes, text messages, and talk about that first week, I am amazed that Dana lived through those first two nights. When I brought her to the ER in the early morning hours of July 17, I really thought she would be given an antibiotic and start to feel better in 24 hours. I had no idea of the nightmare that lay ahead.

July 17, 2018
8:09 a.m.
Me: Dana is in ICU with double pneumonia, blood infection. They just intubated her. She is sedated now. The family just got here but I’ve been here since 2:30 a.m.

1:49 p.m.
Me: They are keeping her sedated.

July 18, 2018
Me: She’s fighting for her life. I am going to the hospital this morning.

July 19, 2018
Me: 11:47 a.m. I won’t be in to work after all. They are seeing some improvements and trying a few new things so I want to be here. It is scary.

July 20, 2018
Me: 9:53 a.m. They have markers on her fingers and toes to see if the purple is decreasing or increasing. They are weaning her off more meds. She is still sedated.

NOTE: At one point there were 14 IV bags connected to Dana. Four of those bags were the vasopressors. We were told that normally a person has one or two vasporessors. Many on staff had never seen anyone with four pressors!

July 21, 2018
Me: 10:45 a.m. Doctor said Dana has hit rock bottom. She still has a breathing tube and she is not really coming out of the sedation.

July 22, 2018
Me: 8:47 a.m. Dana responded appropriately to commands for the first time in two days.

July 24, 2018
Me: 10:59 a.m. Bronchioscopy went well. A determination will be made this afternoon about whether or not the breathing tube can be removed.

5:02 p.m. The oxygen tube is out of her throat but she still has oxygen at her nose. She is very weak so her voice is barely a whisper. All her systems seem to be working. Her lungs are very congested with the pneumonia. She still is not getting food. She has an IV but it is not nutrition.

July 25, 2018
Me: 9:55 a.m. Doctor said Dana has to cough today and get rid of the mucus in her lungs or she will backslide.

9:11 p.m. Now the doctor says he might do a trachotomy tomorrow. Patients are not usually kept on a breathing tube longer than four days. Also, doctors usually skip a second intubation and go right for a tracheotomy. It makes it easier to return to eating regular food and being able to talk. It could be temporary or not.

July 26, 2018
Me: 9:19 a.m. The doctor just told Dana that she will need a tracheostomy. She is writing us notes now. She made a sad face but didn’t freak out. She probably didn’t grasp the situation.

Guest Writer

July 22, 2018

Notes from Messenger.

1:16 a.m. BF wrote: Dana is good. The doctor ordered her back on the vasopressor. The nurses changed the bedding, washed her and moved her position and her blood pressure dropped down to the 60s but she improved. She is super tired and looks comfy.

6:17 a.m. I wrote: I called ICU and talked to her night nurse. Dana was all right through the night. She is off the dopamine and her blood pressure is okay. She is moving her arms as much as she can in the restraints. She is responding to her name. She has a low fever so she was given Tylenol and seems okay.

8:49 a.m. I wrote: Dana responded appropriately to commands for the first time in two days.

7:57 p.m. BF wrote: The third day culture for sepsis is negative. It is now gone! There are two spots of pneumonia. One is improving; one is staying the same but not worse. They are re-positioning her in the bed.

I wrote: Make sure her restraints are still on!

BF sent photo of her hands in restraints.

Every morning for four weeks I would call the ICU department and ask to speak to Dana’s night nurse for a report on how Dana’s night went. I wrote: The nurse said Dana had a good night, she is still responding, she got some sleep. They gave her pain meds for her discomfort. Her temperature is okay, BP and oxygen are good, still has good urine output. But still no bowel sounds. Still has edema in hands and legs. They washed her without her stats dropping.

Guest Writer

July 23, 2018

During these first few days of visiting the hospital and checking in at work and keeping up with household stuff, none of us ate or slept very well. The doctors encouraged us to take care of ourselves.

We scheduled our lives so we could be in ICU when the doctor did his rounds in the morning with all staff and reported on each patient. We were part of Dana’s morning report.

Someone shared the Navy SEALs breathing technique called “Box Breathing” or “4x4x4” to calm down in stressful situations and I often found myself using it.

You can Google it, but here’s one brief how-to: www.healthline.com/health/box-breathing/.

Throughout the day and night she kept opening her eyes like, “Oh, hi,” and then going back to sleep. She was unable to move about on her own and still had arm restraints. Most of the time when she was re-positioned by the nurses, her BP would drop.

Guest Writer

July 24, 2018

My morning report from the night nurse before she left for the day: Dana was awake a lot during the night. (By “awake” I mean that she opened her eyes and looked around but was unable to talk and she is still pretty doped up.) The nurse asked Dana if she wanted the music turned off and she shook her head no. Her temperature went down, then up, so she was given Tylenol.

(Did you know one dose of Tylenol administered through an IV is $500?)

Her blood pressure is fine. The respiratory nurse brought the amount of oxygen being delivered through the tube up as her oxygen level was sitting at 92 to 93. Urine output is great at 100 ml an hour, but she has a lot of fluid to get rid of.

Her bed was put in a sitting position but can’t be left that way for long because her legs are so swollen that it’s uncomfortable to bend them. Still no bowel sounds but abdominal CAT scan doesn’t show any problems.

There’s a gap in my Messenger notes. It seems like there was talk of removing her oxygen tube.

July 25, 2018

7:06 p.m. I wrote: They are starting the pressor again. Her BP fell to 86.

9:22 p.m. BF wrote: All is good. Stats are good. She is still on the pressor. She wants someone with her at all times.
I wrote: So she’s really alert?

BF wrote: Yah, pretty alert.

I wrote: Is she coughing? Have the nurses been suctioning her throat? Did the respiratory nurse visit?

BF wrote: They tried suctioning and got some stuff out. She is communicating that her stomach is upset. She had to poop like 10 minutes apart.

I wrote: Does she still have the food tube in her nose?
BF wrote: Yes. Are you having a bit of anxiety? Restraints are good also. Dana was given fentanyl (which makes her sleepy).

NOTE: Occasionally, doctors and nurses would talk to us about ICU delirium. It is an interesting and much-researched topic. From the site ICUdelirium.org comes this information: “Delirium is common. About 2 out of 3 patients in ICUs get delirium. Seven out of 10 patients get delirium while they are on a breathing machine or soon after. Experts think delirium is caused by a change in the way the brain is working.”

From ACPhospitalist.org comes this: “Preventing delirium in the ICU doesn’t have to involve sophisticated medical interventions. Doubling the length of family visiting hours halved rates of ICU delirium, according to one study. And twice-daily occupational therapy cut the risk of ICU delirium even more dramatically when added to standard preventive measures, such as avoiding restraints and benzodiazepines, according to another trial.”

Guest Writer

The family was quiet on Facebook about what was happening to Dana in the first few days of her #neardeathexperience. We at first did not fathom the scope of her illness, the pneumonia, the fact that she was taking her last breaths on July 17.

By July 19 the situation was becoming clearer and friends and family were being informed that Dana was in the ICU department and might not make it.

Her brother Jeff posted his first reference to the situation on Facebook on July 19. He wrote: 5 years ago we were having a blast on the Lake. Today she is fighting for her life. Please keep Dana in your thoughts and prayers!

He shared a five-year-old Facebook post with a photo taken while they were fishing on Androscoggin Lake. His caption: Me and my awesome sister on Androscoggin Lake! Photo taken July 19, 2013 in Wayne, Maine.

 

Guest Writer

Dana has been in the ICU since July 17. Many days she was in a medically induced fog and slept a lot. Many specialists came in to see her: neurologist, pulmonary doctors, nutritionist, physical/occupational therapists, respiratory therapists, kidney specialists, infectious disease doctors, and more. Some days we would visit her and just sit and watch her lying in the bed, breathing with the help of a ventilator, hooked up to so many IVs and monitors. Every day she was having a chest X-ray to see if the pneumonia was getting better. She had a tracheostomy because she still needed the oxygen that she couldn’t get from her lungs because they were full of pneumonia. Those early weeks were very scary.

The edema in her hands and legs was incredible. It was painful for her to bend her knees to sit. She was on Lasix for many days and though she was producing urine, her body held onto the extra fluids from all the IVs pumped into her 24/7. In this photo, you can see the edema in her hands and legs – 70 pounds of extra fluid! This photo was taken July 27, 2018.

Aug. 5, 2018
7:47 a.m. This has been a roller coaster. Her spirits seem better. She is getting out of bed at least once a day. She is using the ventilator less. She still has persistent spots of pneumonia.

8:47 a.m. Dana played a joke on us by having the nurse keep the feeding tube tape on her nose but the tube was no longer needed. She wanted to see how long it took us to notice.

Aug. 6, 2018
7:46 a.m. The ICU staff called me at 5:30 this morning. Dana might get a gastric tube inserted in her belly today. The doctor who would be doing the surgery will do an ultrasound first and if he sees fluid in her abdomen he won’t do the surgery. The gastric tube is to help prevent aspirating liquids when she’s swallowing.

Aug. 9, 2018
4:20 p.m. Just got done the trach cleaning class.

One of my worst fears is coming down with a cold and struggling to breathe. The doctor told me I would go into a panic when it happens.

The pneumonia isn’t going away quickly. There was no change at my last six-week visit so the doctor took me off the antibiotics for the pneumonia. Seems I have plateaued. Continue reading Living with pneumonia