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Normal is Relative

Some days are better than others here in lockdown. Now don't go thinking that a day in here can be compared to the outside. It's a completely different world and that's ok. It needs to be. The needs of the patients in a cardiac ICU often fall under categories like Emergent, Urgent, Soon, and Whenever. I am both lucky and unlucky to be falling almost completely in the Whenever category, with a few forays into Soon.


For example, today my nurse, Ashley, met with me fairly early in her shift. (Shifts are 12 hours each, 7 to 7) She introduced herself again (I'd had her once before as a night shift nurse) as well as her nursing student, Dana. She did a brief assessment and asked me what I wanted to do today. I told her I wanted a walk around the unit as I hadn't gotten one yesterday. (Walks are very important physically and mentally. Getting your butt moving is a huge part of both pre-habilitation and recovery.) She declared that to be completely do-able and just needed to take her other patient to the OR for a couple hours and we would do it as soon as she got back.


I didn't see her again until just now, at about 5:15.


Now nobody panic that I'd been left alone. The nurses always have someone cover their other room(s) if they're doing something or going somewhere. I'd had several other nurses, PAs, and the charge nurse check on me and distribute my medicine all day. So nothing was missed...except my walk.


But that's all part of what makes a day here different from regular life. I'm almost literally chained to this room. I have leads attached to my chest to monitor my heart and respiratory rates and rhythms, a pulse ox monitor attached to my finger, a blood pressure cuff that goes off every hour on the hour, and my PICC line attached to the drip medicines that are helping my heart. My cables, cords, and lines don't even reach for me to stand outside my door. So it's quite maddening to realize I literally can't leave this room for myself. (Mostly because if I take all this stuff off, the monitor and IV alarms will start screeching and then someone like poor Freddy has to tackle me to the floor in my blue-gray gown as I'm shuffling down the hall, granny panties flapping in the wind, wearing ugly yellow hospital socks and yelling "Vive la révolution!" And nobody wants to see that. Nobody.) (But also because if I stage a breakout they'll call my husband and my mother and I'm not sure who would be more upset with me. And then they'd tell Sam and I'd get the "I'm very disappointed in you" guilt speech which is the worst of all. So no, thanks. I'll pass.) All of that descriptive scene setting is to say, while it sucks that I can't walk around whenever I want, at least I'm mobile. And doing really well physically, especially when compared to many of the other patients in this unit. The pre-transplant patients are tough ones to place. We can't go to a step-down unit because we really need to be closely monitored and sometimes assisted in ways that only a cardiac ICU can provide. But it can be hard on patients like me that went from working a full day at work on Monday to having dinner served at 4:30 on a school tray on Tuesday.


So let's review.


Cons:

- I live in one room.

- I eat dinner at 4:30

- I can't walk outside of the room without my nurse

- I don't know when I'll leave

- Lots of other patients have needs that require more attention than me


Pros:

- I'm looked after by some of the best doctors in the state

- I can basically take care of myself which also means

- I can do pretty much whatever I want

- I have plenty of options for keeping me busy and sane

- As an introvert, it's nice to have this much time alone after living in a world that caters to extroverts

- Lots of other patients have needs that require more attention than me


It just makes a bad day look very different for me right now. Today wasn't great. I slipped into self-pity a little. But then I saw that I'm not the patient, the nurse caring for the patient, or the family of the patient that had a 2 hour surgery turn into 8 hours with complications. So I'll take my books and crayons and 4:30 dinner and sit nicely in my chair until my next nurse check in. Because today wasn't great. But it wasn't bad. And tomorrow I get to try again. So vive la révolution!...just not today.


Addendum: True to her word, Ashley made sure one of the night shift nurse assistants came to my room first thing to take me for a walk. We did 4 laps of the unit and I was grateful for every one.

4 Comments


Guest
Oct 08, 2022

What is up distant cuz?! Tommy Taylor here with my wife… we just wanted to share some heart to heart love. Read your blog, you’re quite talented! In a round-a-bout way, we, too, are in a hospital in Ann Arbor, MI, with our first born baby girl, Grace. She has CHD - HLHS - currently going threw a couple open heart surgeries. if you’re interested in reading more of our story: wwwgeheartwarriorfoundation.org - we would love to talk and connect. I think the last time I saw you was at Universal Studios, with the Yaussy bros. My wife and I wanted to let you know we are thinking of you. Sending much love!

-Tommy Taylor

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naceynae
Sep 27, 2022

I bet the nurses love love you!!!! Keep up the great attitude and prayers continue on this end 🙏🏼❣️

Hugs,

Grace

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Guest
Sep 27, 2022

I imagine the mundane can become maddening for some. Thank you for a peek into your thoughts. You are cared for and prayed over daily here in the Parker household.

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Carol Sigmon
Carol Sigmon
Sep 27, 2022

I love your style of writing. Cheering you on!

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