I flew to Cincinnatti in May of 2014 for a consultation. I had been there the previous year and had an intense surgery followed by an even more intense recovery. I left there vowing I would never do that recovery again. I vowed, that even though I could breathe, I would never willingly submit to being intubated and on a ventilator while semi awake again. I remember feeling the tube through my nose, the hard plastic down the back of my throat. I remember thinking I needed to stretch, yawn and take a big breath. I stretched, I attempted to yawn and was met with searing pain from the invading tube and a pushing of air into my lungs that I wasn't doing. Feeling air forced into my body was enough to send my mind into overdrive. I had pleaded to have air for so long and then there I was, resenting every breath that damn machine forced me to take. I wanted to be in control, I wanted to be strong enough to be the one doing the breathing. I didn't want to rely on machines. This started the ball rolling for more medicine to keep me comfortable which was a double edged sword. I have few memories of being intubated after that. I do, however, have strong memories of when they took the tube out. And strong memories of them stopping the medicine that had kept me comfortable. And even stronger memories of the panicking, suffocating withdrawals I suffered all night. My skin was its own being, it was determined to crawl off of my underlying tissues with the legs of a million centipedes. I needed to run, had to run, just please let me move, yet I was trapped in my bed in ICU. I pushed the button several times over, finally pleading in tears for anything to take the edge off, to make the itching go away, to make my heart stop pounding out of my chest. I hated that recovery with every fiber of my being. I vowed to never do it again.
May, 2014, I went back for my consultation, this time at a new low with my tracheotomy in. I was in constant pain, I couldn't breathe, walk, talk, live. I couldn't turn my head, I couldn't tell my kids I loved them with the voice they longed to hear. I couldn't even whisper. I was defeated. Flying over 2,000 miles, alone, with a trach, was in and of itself an accomplishment. I went in thinking I would be gone less than a week. I stayed for over seven. I willingly submitted to that recovery again. I refused to be anyone but a mother in that very moment. To sacrifice and submit to what I knew would be an intense recovery to give them, my babies, the chance of hearing mommy say "I love you" again. I had a slide trachealplasty done. They cut out over an inch of my trachea, reconstructed and sewed my airway back together. The surgery took over eight hours.
The recovery was even worse.
Apparently I'm a comedian while intubated. Several times I've heard some amazing stories about the jokes I've told while medicated. I guess this time around my stubborn self decided to prove that I was the one breathing and not the machine. I kept telling the husband "watch this" and I'd hold my breath, refusing to let the machine forcibly intrude my lungs again. Then I'd laugh. I'm sure I'm the only one who found that funny (odd, that's usually how my jokes go anyways). I don't remember much of round one of being intubated and sedated that recovery. I remember a med student extubating me and by that I mean I remember her feeling as though she was ripping out my new airway and my sinus cavities with it. Med students, please ensure you have completely deflated the cuff before pulling with all your might. I also remember the day the doctor came in mid day, unannounced. I remember thinking that's not a good sign. It wasn't. A resident had reported back he thought he felt air under my scar. The doctor thought he felt it too. Numbing cream was applied with a promise to return. An hour later a large needle was inserted and I watched as the doctor examined the air that he was now withdrawing from my neck. Damn it. It now became an urgent matter, NPO orders thrown in and watching, alone, the tick tick tick of the clock waiting for the surgery team to get me. I was an add on. There was no time given as to when I would go down. My anxiety was at an all time high. I was to be intubated and on a ventilator again. My neck began to tighten, my jaw was crooked and my body was having panic attacks I've never felt and could not control. My body was contorting upon itself, my back and shoulders throbbed from how tight my neck was getting and I felt like I couldn't breathe. Nurses held my hands, stroked my hair, tried to talk me down but it got worse. Ativan didn't help, Versed didn't help and then I remember waking up intubated with a nurse sitting by my bed watching me. My hands had been restrained to the bed. I was told I have a severe allergy to Ketamine, that it's imperative I never receive it again. I guess it got a bit hairy there for a while. But I woke up and I had that damn tube again. Apparently I was more comfortable this time. I have several pictures I took of myself during this time that I don't remember taking. I'm making silly faces in them all. I remember fighting with nurses over not being able to suction myself. I remember hating several nurses for them refusing to allow me to do so and becoming a nightmare patient to battle it. I eventually won.
Seven weeks away from my kids. At times biweekly surgeries. Almost two weeks alone in a hotel, in severe pain. I've never felt lonelier. I didn't have a voice to call and talk to anyone. Reading words on a screen, everyone meaning well with their texts, contributed to the loneliness. It becomes autonomous and empty. I felt nothing of emotions. I stopped eating, drinking, peeing, among other things. It was summer and yet I had the heater set to 85 and was still shivering. I took baths full of pure hot water every hour, I couldn't get warm. I remember shivering so hard in the tub that I couldn't get the drain pulled to let the water out. I shouldn't have drove. I found myself in the emergency room of the hospital. I needed help. Admitted and emergency surgery; I was dangerously close to having the stent in my airway perforate through my trachea. My body was quitting on me. They removed the stent and it was like I was given life again. I was starving. I could breathe better than I could ever remember breathing. I was alive again.
It only lasted about two weeks before I had a coughing fit that left me having difficulty again. It's never been the way it was for those short two weeks again. I'm craving that kind of breathing again. I'm hoping to get there someday again. It's why I keep going. I know it can be better. I know I can be better.
Would I do it all again?