*Disclaimer* Some of the things in this post can be upsetting to those that are medically squeamish, or have a weak stomach when it comes to stuff related to the human body.
Extubated, Sprite and ice acquired, and given the all clear to eat the first solid food I’d had in two weeks was equivalent to winning the lottery for me. Jason was going to be coming to the hospital the next day and I told him all I wanted was popsicles.
Here’s the thing: I have an unhealthy obsession with freezer pops.
I’m a texture person, meaning that I can love the flavor of something and be completely repulsed by the texture of it and won’t eat it…. Most fish, watermelon, bananas… the list goes on. But, there are a brand of freezer pop popsicles that our local stores ONLY carry in the summer that have the best popsicle texture and flavor of any I’ve had… and when I tell you I stockpile them for the off-season, and have paid higher prices to order them off of Amazon, it’s no joke. With my job, and the amount of meetings I run during the day – these popsicles have saved my voice more times than I can tell you – I love them.
So imagine my surprise to find that due to intubation, and two weeks of being in the hospital, being on oxygen, etc., had completely changed my taste buds. I no longer liked the taste of Mountain Dew (which I’d lived on), and could only really finish half of one popsicle when Jason brought them because the flavor was just off.
That was the first of many differences. Everything just felt wrong. My skin hurt, dry to the point of having rough patches, I had an oily build up in my ears, and even worse on my scalp and face. It was the equivalent of the scalp flake stuff that infants get called cradle cap… it was awful. And being in the ICU – no showers. They’d bathe you, but it wasn’t the same, not even close. Again with the texture stuff, I could barely put my hands in my hair without feeling like I wanted to cry. I would learn the patches of dry skin was due to the amount of diuretics I was given to clear my lungs, and I would learn something I didn’t think biologically possible.
Within two weeks time, they’d drained enough fluid from me that I had lost 60 pounds. I noticed it most in my calves and feet – and until that point I hadn’t realized how much of my swelling wasn’t just weight gain from living a sedentary life. From the doctors notes on my chart, I would learn that for the first 12 days I was in the hospital, I was expelling 3-5 times the amount of fluid that I was being given per day.
Physical Therapy came in and the 20 minutes they worked with me to even stand at a sink and wash my face or brush my teeth that first day was exhausting and I quickly grew frustrated at what I took as my body completely betraying me. I had never been good at asking others to do things for me – let alone letting anyone help me with things or even remotely THINK I might need help with anything, so to become a toddler basically who needed to depend on someone for basic, simple things was heartbreaking to me.
The doctors were still doing their “wait-and-see” routine when I would ask for next steps and how the future looked as far as my care and regaining any sense of normalcy to my life. I hadn’t even brought up going home in the first 24 hours because I knew there was zero way I could function at home, in my home, with the limited mobility I had. And while I was ecstatic to be awake and extubated, the fear and depression in me was almost suffocating because I didn’t know how to move forward from this, nor did I really understand just how serious things had been yet.
I was moved out of ICU after being extubated, moved across the floor to the Critical Care Center, which was a surreal experience. Nurses who’d been with me for the two weeks I’d been in a coma, but had been off for a day or two had come back to work and I’d just up and vanished from ICU… so they’d come by just to see me. All of them knew Trysha – she’d established really great relationships with them throughout my time there, but what struck me the most was the constant thing they all said – “We were so worried about you.”
They would all talk about how serious my case was, a few even mentioned that it was rare to see someone rebound like I did because I’d been intubated for two weeks and they normally don’t get a good outcome after something like that. I chalked it up to the fact that we were still technically going through the pandemic, and that they were used to seeing extremes. I also downplayed it because in my head – it was pneumonia! The only people who I knew that ever died from pneumonia were babies and the elderly! It wasn’t until my new Critical Care treating physician showed up the next morning that I started getting the first glimpses of how bad my case was.
Dr. Abbineni started off like the other doctors before her – we’ll wait and see – but I stopped her. I explained that this gray-area prognosis didn’t work for me and I would never make progress if I didn’t have a goal or a mark to hit. I needed something to work for that I could see clear movement forward and if I didn’t have that I would likely get apathetic and never progress much from where I was at that point. She did what the rest of them wouldn’t do – she finally explained a bit about the uphill battle I was facing, not only because of how bad I had been when I came in, but also because of how long I had been intubated. She further explained that cases like mine were extreme, and it would likely be months before I was anywhere near back to what would be considered normal.
Trysha tried to interject and further explain that my ambition and drive to achieve something is next to none, so just to give me goals and between the both of us, we would get me wherever Dr. Abbineni thought I needed to be.
She explained to us that it was a slow process of getting better, as I was going to need extended care to be able to support myself at home. She laid it out like this: It would be at least 2-3 weeks before I could be discharged from the hospital and even after that happened, it would be an additional 2-4 weeks in a long-term rehab facility that would focus on physical therapy and getting me back to being able to do basic daily functions like bathing myself or walking from one room to another. She explained that it was suspected I had severe obstructive sleep apnea, and that I would need a sleep study or CPAP machine to be at home, things that couldn’t be done while I was in the hospital. She explained that even after I got out of the hospital and the rehab center, that I would need home health care on top of that to come daily for a few weeks and taper off just to make sure I could function around my own home.
I’m not going to lie – it was devastating to think of not being able to go home for at least another month or two. I felt like I’d already missed too much – I’d missed most of my favorite season in our hometown, Fall leaves changing, being able to have windows open instead of the AC running, not to mention my severely codependent dog had probably forgotten who I was. As the days went on, it was becoming more anxiety-inducing to be stuck in a hospital too. Once the initial upset cleared, I asked for a checklist. What things did I need to be able to do to be released from the hospital? Then what would I need to do to be released from the rehab facility? Etc.
First on her list – I was presently on 6 liters of oxygen 24/7 – she couldn’t release me while I required that much oxygen. I would have to be at 2 liters or less. Second, I would have to be able to reasonably stand on my own and with at most the aid of a walker, be able to navigate around a room without de-statting my oxygen levels. She explained that pulmonary would come in and advise me of breathing exercises I could do, and that I should be up walking as I could with the nurses as much as possible. I assured her that I would make it happen.
It was exhausting, but I had goals.
I walked, I sat upright in a chair as much as I could and maintained gradually lowering my oxygen intake during the day, keeping my stats up in what the staff considered normal range. Physical therapy increased seeing me from once a day to twice a day, and I forced myself to eat high-protein foods to be able to build the energy I would need to get my strength enough to keep pushing forward.
And I also started plotting my escape plan which was that I was not ready, under any circumstances, to go to a rehab facility and deal with the wait and see game with a place like that…
Here’s the thing – I do not take well to being told I can’t do something. I’m typically the person who will do it out of spite just to shut you up. I’m smug about it too, not going to lie, I know it’s a toxic trait – but I published a trilogy because of it, just saying. So when they all told me that I couldn’t go home any time soon… it became a mission to prove them wrong. I thank God daily for the drive He gave me to be this way – I do not back down easy. I know it is because of that – and also because of the amount of prayer that was still being held for me – that I managed to accomplish what I did going forward.
Day 2 post extubation was more frustrating because I was just about done with being told I couldn’t do stuff. I was tired of being stuck in a bed, of not being able to use the restroom…. THIS was the biggest driver. Guys, you have it so freakin’ easy when it comes to using the bathroom from a hospital bed. If you have use of your hands – they can hand you a jug and leave the room, you never have to move. Us women however, do not have it so easy… they either make you sit on the most uncomfortable bedpan possible, and you’re already unsteady so if you’re heavier set (like I am) you’re wobbling on the damned thing, or they give you this thing that looks like a sponge in a banana boat device that almost like suction seals to your lady bits which isn’t much better. After two days of doing this, I’d had my fill of it, and finally convinced one of the patient care staff to help walk me to the bathroom and let me use the toilet. One time was all it took and I wouldn’t hear of doing anything else, I’d already be sitting up and on the edge of the bed by the time they came in so there was no other option… I know, I was a terrible patient. But damn it – I had to be to an extent.
Day 3 post extubation:
There was more walking, more fighting with Dr. Abbineni to set goals. I argued that I couldn’t get off the oxygen, or get it to reasonable, dischargable levels, if they weren’t willing to back off how much I was getting during the day. I was tired of lying in a bed, but it hurt to move because I’d been lucky enough to be blessed with two large bed sores. Then on day three, they switched the blood thinners they were giving me and I had an allergic reaction to it, broke out in a large rash all over my torso. It was terrible and painful so they gave me benadryl which made me sleepy and limited my time of being up and functioning. It was a frustrating setback.
Day 4 post extubation – This was the turning point… the moment that the doctors and staff realized I wasn’t screwing around – I wanted out, I would get out, and I would NOT take anything less than going straight home from the hospital. I’d successfully gotten my oxygen level down to 2 liters during the day while walking, and not at all while just sitting upright. A lot of coaxing went into them tapering that off, and talking with the nurses instead of waiting for pulmonology to listen to me. Physical therapy came in and I could stand out of bed, walk with a walker, use the restroom for the most part by myself, etc., but Dr. Abbineni said it wasn’t enough because I still needed the CPAP machine at night, and because she felt that if I was up walking around and exerting myself without higher oxygen, I would de-stat.
Challenge accepted!
I explained that I was on the CPAP at night because I was forced to – that they should at least let me try to sleep without it, sleep with only the nasal cannula oxygen at night and if I maintained my oxygen stats – well then, there you go! She agreed, and scheduled a test of me walking without oxygen while monitoring my stats.
That afternoon PT came by and we walked the whole floor, no de-stats. I explained to them that I did not want to go to a rehab facility. I explained that I didn’t think I would need it (here’s where the plotting came into play). I told them that I maintained my oxygen stats while being upright, and while laying down at a slight head-elevated state, just on oxygen if I started to dose off. I explained that the way the house was laid out, everything I needed was on the first floor, and that with Trysha and Jason’s schedules – someone would ALWAYS be home with me. I advised them that Jason had already gotten a walker and a recliner for me to sleep in until we could get a different bed (more on that in a bit). I had a support system, I pleaded.
Then it was pointed out (or I remembered, I don’t quite recall) that the only steps I would have to climb were the three or four to get into the house from the garage or the front porch. So PT brought out the moveable stairs they had, and we worked on stairs. I climbed up and down those stairs for a solid 20 minutes, without oxygen and without my stats dropping. Not gonna lie though – I could feel the burn in every muscle of my body, and could have likely slept for 12 hours after if I’d let myself – but I’d done it and done it so well that they officially signed off on the recommendation that I needed no further PT and would not need rehab!!!
Also – that night – no CPAP. I maintained my stats through the night on oxygen alone, reiterating my point – do not ever tell me I can’t do something.
Day 5 post extubation – Dr. Abbineni did the rounds in the morning, saw that I’d passed all of the markers she’d set, and for the first time in dealing with her, actually saw/heard her laugh about it. She then dropped the sad news… she couldn’t get me home that day because it was a Friday, I’d have to stay the weekend. By the time they would get everything processed to get me home oxygen for me to sleep, the home healthcare delivery service wouldn’t be able to get it delivered until Monday. She was still tentative about it though, she wanted to see that I maintained improvement over the weekend, but if all went well, she said she would be willing to discharge me to go home – NO REHAB!!!!!
My next two days were spent prepping for my release, as well as growing more and more anxious that I wasn’t going to be able to get out of the hospital, and all of the real-life stuff I was avoiding thinking about while I was in the hospital, mainly because there wasn’t much I could do about it from a hospital bed. But I wouldn’t focus on that, I would focus on the fact that I only had to get through the weekend, and then I would get to go home!
Mustard Seed Mama 