by Rachel Doboga
I decided that the most accurate way to share my hospital story is to share my journal, so I am making myself vulnerable by sharing it with the world. I have only cut out one health detail and added explanatory information where needed.
Sunday, October 16th, 2022
I’m not Ok. Not at all. I spent last night in the emergency room and got bumped into the IMCU around dawn. I have a serious infection in my gut. I vomited 11 times in 6 hours and was aspirating so drastic measures had to be taken. I had to have a suction tube threaded through my nose down to my stomach!
Let me tell you, swallowing that tube was no easy task. They immediately pulled 2 liters of fluid from my stomach! I also have pneumonia and a miserable migraine. Between the florescent lights and loud voices, I just can’t catch a break!
On top of all this, I can’t rest. Not without any meds. They’re withholding all 18 of my medications except the few that can be given through iv because I can’t keep anything down. I am exhausted. I haven’t had more than two hours of consecutive sleep since my nap Saturday. I’m having trouble following a single line of thought. Even though I already know the answer, I keep asking for meds for nausea. Of course, they keep refusing. The nurse said, “You can’t have any meds so you’re just going to have to be nauseous. Today’s going to be rough.”
Every time I write a worry or complaint, I try to find something to be grateful for. Today, I’m grateful that I stopped vomiting and that Evan holds my hand whenever the nurses let him close. I’m also grateful for the iv antibiotics fighting my pneumonia.
Monday, October 17th, 2022
I just said this to Evan – “I don’t like our nurse. She kept saying that there was nothing she could do when she kicked you out for a COVID test that SHE decided you needed, but as soon as she needed help with the tobii (eye gaze computer), she said “We’ve got to get him back in here.” That’s when she called you.”
Upon hearing this, Evan said, “We just have to be warm enough for each other.” He has the heart of a poet.
They keep turning me and laying me flat, so now my lower back hurts more than the migraine! However, they are giving me a full mg dilaudid every two hours. It helps a lot. My uncle, a retired anesthesiologist, calls dilaudid “morphine’s big brother.” My primary provider at the ALS clinic really wants me off narcotics, but saying no is very hard! I will definitely start turning down all narcotics tomorrow.
I’m grateful Evan got to return quickly. Also, I’m grateful that my mom flew across the country to be with me and help Evan (he never leaves me alone in hospitals except to jog to the cafeteria)! With my mom here, he can go home to shower, eat something healthy, and spend some time with our little chihuahua Pickle. Pickle was pretty mad about being left alone by his favorite humans just three weeks after his big sister Malka passed, but he came around. I’m infinitely grateful for my mother-in-law / fairy godmother for feeding Pickle and letting him outside.
Tuesday, October 18th, 2022
I forgot to tell you about the drama with the scan of my lungs on Sunday! They wheeled me out of my hospital room on a gurney for a CT scan of my lungs and then transferred me to the table for the scan. However, my lungs couldn’t handle all the movement. My numbers started going crazy! I think my PIP (Peak Inspiratory Pressure – the pressure it takes to push air into my lungs) reaching the danger zone was what freaked the CT techs out. They all started swearing which was really scary!
I’m grateful for the technology that allows my doctors to see what’s happening in my lungs, and I’m very grateful to the angels by my side that protect my left lung – the one that is partially collapsed – from completely filling with fluid like last year.
Wednesday, October 19th, 2022
They said the nose tube would only be in a few minutes, but it’s been 4 days! I’m absolutely miserable. I’ve never felt so bad in my life!
I’m incredibly grateful that I got ALL my meds back!!! I’m also grateful that my mom is such a fierce, outspoken advocate for me that I’m comfortable with Evan going home for a few hours.
Friday, October 21st, 2022
I was unable to write Thursday because someone gave me dilaudid even though I specifically refused it at the same time as tizanadine and lorazepam so my BP dropped to 67. It took TWO doses of midodrine to revive me. I don’t remember any of this, by the way.
My reaction to so many meds at once made them afraid to give me any painkillers at all! They were reluctant to give me tizanadine, too, even when I had severe muscle spasms that evening. Evan had to advocate for me and coach my breathing during the hour long wait for the muscle relaxer.
“Try to rest and relax,” he said in a calm, steady voice.
“I can’t! I’m in so much pain and the bed is making it worse!”
Evan looked around for the power button and turned off the bed. The relief was instant. Painful still, but at least my sandbed wasn’t shaking me.
“I wish we were home so could just give you the tizanadine,” Evan said. On nights like these he looks ancient, way older than 36, but I still think he’s the most handsome man in the world.
I’m grateful I have the most compassionate husband in the world. I’m also grateful that my mom sits with Pickle when it is her turn to shower and eat. He’s been acting really weird ever since Malka died. He’s just not bouncing back. He stares at Malka’s bed for a loooong time, circles the house hopping on 3 legs (we’re brainstorming how to afford surgery for his bad leg), comes back to her bed and stares again. He also cuddles in the blanket where they used to spoon.
Monday, October 26th
I’m home! I have to catch you up, dear journal. I’ve been too weak to type so Evan went letter by letter and watched for my blinks to form words.
Now for story time. I’m entitling this tale: “Hospital of Horror.”
Evan turned his back for one minute and they gave me morphine even though I have a well-documented allergy to it! It was awful. I had these terrible hallucinations that there were bugs swarming all over me. Evan talked me through it, explaining that they don’t have bugs in hospitals, but it was horrible all the same.
Then every time they turned me, my BP dropped to the mid-80’s and I felt like I was dying, so Evan took action. He acted as my respiratory therapist and ended up managing my oxygen! Thank goodness he’s so smart; he picked it all up right away.
I’m grateful Evan is so involved in my care. He will make a great respiratory therapist after I die, but for now he seems content to be my primary caregiver.
I’m also grateful that I AM HOME! Colored Christmas lights around the ceiling of our bedroom, my own bed and clothes, our bird Jasper singing, Pickle begging for everything from tortilla chips to eggplant, I missed it all!
* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!
If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com