Think back to every movie or TV show you’ve watched where someone has been in a coma. They start moving their fingers or fluttering their eyes, the family shouts for a doctor because the patient is awake and within moments all the tubes are gone and the patient is upright and talking…
I’m here to tell you that is all a lie.
Now I know that my case is extreme, and 14 days is a long time to be in coma and intubated, but still. You know, if you’ve ever had even minor surgery, that you can have a scratchy or sore throat after intubation, and that’s only after a few hours. So after 2 weeks of intubation, you can only imagine. Like I said in the previous post, being intubated and awake was a nightmare.
I couldn’t talk, I could barely communicate through broken hand gestures that I wanted the tube out, I wasn’t sedated as deeply, and I was in restraints because every time they tried to let me have free use of my hands, I’d start pulling at the tube.
The doctors and nurses weren’t giving me anything to work with either – their answer was always “We’ll just have to wait and see.” So every vitals check or anything, that was what I would gesture for – to the point of literal frustration. Add in the confusion of not really understanding what had led me to this point because of the medication they give you to wipe your short term memory, it can be so mentally damaging to be in that state. All I wanted was a drink. I dreamed of having a sip of Sprite…. That was it. Ice cold, fizzy, Sprite. And no one would help me – to the point I was getting almost irate with my kids… for not being able to force the issue and get me extubated.
Every check I would fight about being intubated still, get poked and prodded and turned and checked, have all my dignity go out the window because I woke up to find out I had bed sores and had lost significant muscle tone to even move myself at all… and to be completely dependent on someone else has NEVER been something I’ve been okay with… so then I’d fall asleep and think I’d slept through whole days even though it was only an hour or two.
Thank God my girls know me well enough and that we have the relationship we do, because they were the only thing that helped me make it through that. They made me start a list, to help set goals or things to look forward too because I think even they knew I was on the verge of completely losing my shit. So I tried to communicate with them by writing letters one at a time in their hands.
This did not go well for many reasons… First being I was still heavily medicated. Even though they weren’t giving me high dose sedatives, I’d been on them for two weeks so the brain fog I had as they moved out of my system was insane. So trying to spell things out, when I’d mess up a letter and they wouldn’t understand would be terribly frustrating. Then there was one moment where we were attempting to do this, and both the girls were just in a fit of giggles and I couldn’t get out what I was trying to say so I just gave up. They’re laughing so hard they’re crying, and what I didn’t know is how bad they’d needed that laugh after spending the last two weeks the way they had, but all it did was frustrate me further. I gave up trying and just stewed in my frustration.
I would doze on and off, thinking I was sleeping literally days at a time still, but it was only hours really, for the accumulation of a day.
Then, the morning of October 9th, a nurse came in to do her morning check and give me meds, and I of course pushed to be extubated and while it’s likely I took her matter-of-factness as hostility and the medication makes me not remember things clearly – I just remember thinking she had the bedside manner of a wet noodle.
She said that most patients stay sedated while intubated so they don’t have such a hard time dealing with it while they need to be and she could give me something to sleep. I remember nodding in agreement because at this point if they weren’t going to extubate me, I didn’t want to be awake.
Now this next part is graphic and not for the squeamish… consider yourself warned…
My bloodwork had shown low potassium for the majority of my hospital stay, so they’d give me potassium through my IVs. However, this can lead to painful burning and clogged lines if it doesn’t get flushed right after it’s given. This was a problem and one that happened every time they gave it to me that first day I woke up. So this nurse had changed it to be the oral version they could give me through my NG tube. Problem with this is, it’s known to cause nausea and vomiting so you have to stagger the dose. I don’t know if she didn’t flush it through slow enough or what, but when she got done fussing with me and left the room, it wasn’t much later and I started profusely vomiting.
Now, up to this point my head injury was the most terrifying thing I’d lived through, but this quickly made that seem like a stubbed toe. When you’re intubated and vomiting, you’re suffocating, period. You can’t breathe through your nose or throat, you can’t take a huge deep breath in between waves of vomiting because you’re on a ventilator that is controlling the pace of your breaths and does not realize you’re expelling with more force than you’re taking in. What’s worse, I was in restraints, so I couldn’t move or reach a call light, nothing. I was there, laying in the dark of the hospital room and firmly believed I was about to suffocate to death.
Finally, it subsided. After I’d managed to breathe for a moment or two and calm myself down, watching my heart monitors go back to normal range, another wave hit and I was suffocating again. I started hitting my fist against the guard rail on the bed, trying to be loud enough to wake one of my daughters, but to no avail. Finally, as the second wave subsided, in one final slam of my fist, the rail fell off, and the noise of it hitting the floor woke up Kaylee.
Now I’m sure that it was my own frustration, and her lack of being fully awake that led to the attitude she gave me when I tried to explain I’d just thrown up all over myself, and in the dim light of the monitors, you couldn’t see I was completely drenched. I am sure she took it as another effort to get extubated, but she called the nurse anyway. When the nurse came in, she started to explain that I said I’d thrown up. The same nurse who’d given me the potassium, didn’t turn on a light to see anything, but basically started to say that I was likely nauseous but couldn’t throw up because of being intubated etc., when I started profusely vomiting again. That’s when the color drained from her face and I finally felt someone was going to listen to me.
Kaylee went back to the side of the room where her and Trysha had cots set up while the nurse started working on me, and several other medical staff came in trying to assess me. They had me cleaned up in no time, and I never saw that nurse again for the remainder of my stay. I don’t know if it was the exhaustion of the whole ordeal, or if they ended up giving me something to sleep, but I went back to sleep for a while, getting woken up by a team of therapists. The lead explained that she was there to assess how much physical therapy I’d need going forward, and to get me into an upright position, to see if I tolerated being upright after two weeks of laying down.
Let me tell you – I had no idea how quickly your core muscles can deteriorate from being in a coma, when she started talking about how they were going to help me stand, had I not had the tube down my throat, I would have laughed at her. In no realm of my mind did I think that I would have any problem swinging my legs over the side of the bed and sitting up on my own. When I tell you how completely humbling it is to realize you can’t even pull yourself up in bed after that, that it took 3 people to get me standing on my feet, and the tears that started coming from that realization… there just aren’t words.
I am one of those people where I don’t wait for someone to help me with stuff, I usually just tell them to get out of my way because I’ll do it myself. So to be unable to maneuver to sit up on my own was soul-crushing. At that point, I was about to give up all over again, and then the therapist said the magic words. She told me if I would work with her, and get to standing (or better let them help me stand) if my oxygen stats stayed normal, I could be extubated.
There it was – a goal post. A magical line in the sand I had to get to, and if you know me, you best believe I’ll hit the mark or die trying.
Even through tears, pain, and crushing fear, I cooperated and they got me to my feet. I did the 15 minutes of therapy exercises with them while standing, and even let her brush my hair and help me put it up, all without pulling at the tube. True to her words, she pushed for extubation and a few hours later the pulmonary fairy (aka Jeffrey) came to extubate me.
Sprite… that was the goal. Now I was extubated, I wanted a drink. Unfortunately, because I’d been intubated so long, they had to have another medical team sign off on the fact that I could still swallow correctly etc, and that didn’t happen until the following day. However, the nurses were phenomenal and let Trysha get a sprite, and use these oral sponge things so I could wet my mouth with something cold as long as I promised not to try to swallow it or take a drink. It was enough for me to have that, not full drinks, but fractional sips if you will. It was enough of a relief I didn’t immediately focus on the fact that I had no voice. I could whisper, but not loudly. You had to have your ear practically up to my mouth to be able to hear me, but speech therapy said that I had to use it – whisper or not – I’d lose it even more if I didn’t use it.
That 24 hours was the worst and best for multiple reasons – but the hardest parts would follow, as I started the process of getting better enough to go home, and all the work that had to go into making that happen.
Mustard Seed Mama 