When we pulled up to the house, I couldn’t stop the tears. It hadn’t even fully sunk in yet how bad my condition had been, just that I’d been gone for longer than I knew – and had felt like I was missing home in my very bones (if that makes any sense).
Jason had spent the weekend going back and forth from working to making the house better accessible to me and what I’d need for the next few weeks. To say he’d busted his ass to make sure I had everything I needed to come home was an understatement. We’d found out with my sleep apnea, the style of mattress we had was actually the worst thing for me until I’d gotten a CPAP and was wearing it regularly, so I was only released from the hospital with strict instructions that I absolutely had to sleep in a recliner for the first few weeks. He’d gotten that and a walker since I still wasn’t 100% steady on my feet and we weren’t sure how the dogs and cats were going to be around me yet.
He’d completely rearranged the bedroom so that I could sleep in our bedroom, albeit in a recliner. He helped me out of the car and into the house before letting Bella out of the bedroom to come see me.
If you’ve seen videos of soldiers returning from being stationed overseas or something, to dogs they’ve left behind – that’s basically what it was like when she realized it was me sitting on the sofa. Bella had been codependent on me before all this, but she’d also had the last two and a half years of me working remote so I was home with her 24/7 – to then suddenly I was gone for 3 whole weeks and she didn’t understand. To say she was emotional doesn’t do it justice. Our other dog, Cowboy, still kind of a puppy, had only been with us for a few months when I’d gone to the hospital, and while I’m not sure if it was excitement from Bella he was feeding off of or not, he was also very happy to have me home.
We had lunch and then I set up my laptop at the table in our great room, refusing to even go into my office yet – and I worked on the application process that I couldn’t do while in the hospital. Once that was done, I started to feel the twinge of anxiety over what was next… I wanted everything to just go back to normal now that I was home, and even though I knew that wasn’t about to happen, again with the whole goal thing – I needed a baseline. Since Jason and Trysha were otherwise occupied – giving me some space to get the application done – I started researching the terminology on my release papers I didn’t understand and started putting together a timeline in my head of when I would have some semblance of normal back. I didn’t like anything I read, which was basically that there was no real timeline to follow. If you went just based on the length of time I was intubated – I was looking at close to a year and a half at least. Not to mention, I’d been through a severe physical trauma, there was no way of saying I would ever get back to what I’d considered normal.
That first night home was a welcomed relief. To be home with my family, to shower and sleep in my own room – these are things I clearly took for granted and drank them up like fine wine that first night. However, that feeling was short-lived. I needed something to do, something to focus on – I couldn’t just sit and be idle.
I also had to start the process of healing the emotional trauma and damage it had caused not only me, but my family. Trysha camped out in the living room for the first month I was home – paranoid that if she didn’t that something would happen and I wouldn’t be able to get her attention if she was all the way upstairs. When I finally put my foot down and made her sleep upstairs that first night, I know there were tears involved, and I’m sure she didn’t sleep well for checking her phone to make sure she hadn’t missed a call or message from me downstairs that I needed something.
It was very hard to get her out of caregiver mode and back to being my kid.
For me, it was a series of countdowns. Counting down to being back at work for half days… check. Then counting down to being back to work full time… check. Countdown to an overnight sleep study… check.
The sleep study was awful.
I was still so paranoid about being intubated again, that it was making me almost physically ill the closer we got to the study. I was just terrified that the CPAP wouldn’t work, or something would happen and they would decide they’d have to intubate me against my will again and I’d get no say in the matter again. Luckily enough, the sleep study went beautifully, and I was given a CPAP and mask in no time. This is where the real problem began for me with healing though…
My pulmonologist is useless and doesn’t really listen – from support groups I’ve found online, this whole process is a lot of trial and error, and since I live in a rural town, my options are limited on how many doctors I can go to… that being said, because my apnea is so severe and the pressure settings on my CPAP have to be so high – it also limits the style of masks I can have. Factor in that I’m typically a VERY sound sleeper, I end up taking off my mask within just a few hours, unaware I’ve even done so, so I’m not getting the full benefits of it yet.
I believe that the benefits are there – that’s the problem. I am about to duct tape the damn thing to my head because the nights that I manage to keep it on for at least 6 hours, I wake up feeling phenomenal!
Oh well, we will get there I’m sure.
So here we are – 7 months after getting released from the hospital – and I’m sure you’re curious what life looks like now…
I got the internal spot at the client company! That took a huge weight off my shoulders, and I could do a whole post about how bad the vendor company screwed me over with my whole hospital stay and my salary for the next few months until I was able to leave them – but on this side of things it’s just not worth it. They’re scumbags – let ‘em be scumbags.
I learned that the Lord will bring you to the places you hate most just to bring you closer to Him. He will humble you in ways you have zero capacity to understand until you’re standing on the other side of things and realize that everything is a lesson. For me, part of that lesson was being able to let go of my pride, even about some of the silliest things like hair.
Yea, you read that right… hair.
Did you have ANY idea that if you go through a physical trauma like an ICU stay – your hair falls out? I didn’t. Problem is, it didn’t happen at the hospital while I was going through the trauma, it started about 2 weeks after I got home, when I was feeling better than I had in months, was getting around on my own just fine, showering and dressing on my own, etc. – THAT’S when my hair started falling out. And I’m not just talking about a little extra strands in the brush – I’m talking baseball-sized handfuls when you wash your hair.
I have always had extremely thick, silky hair. Even when I used to bleach my hair, people would comment about how thick and healthy my hair still felt. I couldn’t wear any simple hair band, I had to use the thick ponytail holders to get all my hair up, and cute styles like loose buns have never been an option for how heavy my hair was… by 2 months post ICU, I could use loom band rubber bands to do a full ponytail because of how much hair I’d lost, and it was so thin you could see my scalp.
Five months after the worst of it, it’s only just now starting to grow back, but seriously – you want to talk about having to come to terms with vanity you didn’t think you possessed – start losing your hair.
The dry skin hasn’t gone away either… I could sit in a vat of diabetic lotion and still come out looking like a snake shedding its skin. Nothing seems to help and from what I’ve learned it’s something that will just eventually work itself out. My voice came back almost 100% – it still breaks occasionally, and I’m more likely to get hoarse faster if I start to get run down, but I’ll take it, considering they weren’t sure I would ever get it back to normal after having been intubated for two weeks.
All in all – things are close to being back to normal – I’ve been seeing a therapist for a couple months which has helped immensely to process some of the things I still feel about the whole ordeal, as well as come to terms with the reasons why I let things get as bad as they did to get me into the hospital in the first place. I’ve been slowly making changes, and reprogramming my brain to handle certain situations without just isolating and bottling my feelings.
As I close out this series about my ICU stay, I did want to thank the people in my life who went above and beyond anything I thought they ever would for me and my family. From coming to the hospital to stay with my daughters, providing meals or gift cards so they could get meals while at the hospital, to all who donated to the gofundme that was started, to the friends and family that simply came and prayed with them and over me, to the friends we’ve got around the country that couldn’t physically be here – the way you rallied around my family, checked in on them (Trysha especially) and were just an ear for them to cry/vent to if needed, to the friends I have at my work who went completely above and beyond to make sure that I had a job to come back to and helped my daughter navigate getting updates to people who needed them, to my regular doctor who pushed just enough but respected my needs to do things my way, and the entire staff at the hospital on the critical care floor (even the one nurse my sister and oldest daughter didn’t like hahaha)… Saying thank you isn’t even remotely enough…
The amount of peace that you brought can never be repaid. I have a hard time putting it into words how much your kindness and charity to me and my family means to me without getting completely emotional about it. Just know that it is not lost on me and means more than I can ever express.
Mustard Seed Mama 