Emergency Trach change!

It was late Friday afternoon and I had just spent an incredible day in NYC with two of my best friends! The weather was particularly nice out and I was feeling great! With my birthday coming up, I couldn't help but feel on top of the world! I am especially excited this year because my sister and sister-in-law have been working so hard to plan a special party for me. I cannot wait to celebrate another year in my life! I came home to a delicious dinner prepared by my mother and afterwards decided to take a nap so I could be well rested and energized for whatever adventures my Friday night had in store for me. With a set of a freshly clean sheets, I could not wait to sink deep into my bed! I currently live in the basement of my home, and so my bedroom has the unique capability of simulating a dark dungeon. This is very conducive to my unusual sleeping pattern, haha. As I have mentioned before, every night I sleep connected to a ventilator for respiratory support. Although there is no immediate risk in sleeping without it, I am guaranteed a night of tossing and turning and waking up suddenly in a panic from feeling like someone just wrapped a plastic bag around my head. Not to mention it makes everyone in my family extremely nervous, and rightfully so. This essentially means, no daytime naps in the sun, no falling asleep at the beach, no nodding off in the car, and no dosing off on mom's very comfy living room couch. Even sleeping over at a friend's house has become quite the ordeal. Nonetheless, I've become extremely regimented in my bedtime routine in the last two years. Inner cannula? HME? Suction catheter? Syringe? - check! Insert inner cannula into trach tube. Attach HME. Inflate inner cuff with syringe. Turn on very loud, VERY ANNOYING, and makes my room unbearably hot, oxygen concentrator. And finally, turn on ventilator. Tonight however, the inner cuff DID NOT inflate and was officially BLOWN!!! My heart started to race and my palms felt tingly and sweaty. Immediately I knew what this meant. Frantically, I grabbed the syringe and tried to inflate again. Maybe I had done it wrong? Still nothing. A defective inner cuff at 6pm on a Friday in July only meant one thing...New York Presbyterian Emergency Room :( The tears just came, I couldn't even control it at this point. The whole situation was so stressful on so many different levels. Yet somehow what bothered me the most at that moment, was knowing that I had to now walk upstairs and tell my mother (who had JUST gone outside to relax after a long day of seeing patients) that we had to spend our entire Friday night in the ER. I took some time to let out all my emotions and frustrations, and I made sure not to hold back. I cried, I cursed, and I cried some more. After "venting" a while, no pun intended, I washed my face, and collected myself to face the inevitable.  The ride into the city was a quiet one. This was one of the rare times I was actually hoping for traffic. At this point my Friday night was already ruined so any further delay in the process was welcome. Strangely enough at the same time, I also couldn't wait to see the sign for Exit 2 on the PIP, on the way home! Another common misconception about people dealing with illness is that these things get "easier" or "less painful" over time. This couldn't be further from the truth. Especially if your last experience was a horrific one. Every needle prick hurts JUST AS MUCH as the one before it. I could tell as we entered the waiting room that the night was going to be VERY LONG! I was so scared I didnt know what to do with myself. Everything about the environment was giving me severe anxiety. The smell of the latex gloves, alcohol swabs, and oxygen tanks permeated the air. Patients crying, coughing, and vomiting in all corners of the room. We waited almost 3 hours before being seen by a resident ENT (Ear Nose and Throat doctor). His untainted compassion made it quite obvious that he was fresh out of medical school. His approach was gentle and thorough as he explained my options. He proudly stated that he had done hundreds of trach changes before and was certain he could resolve the issue. His confidence lessened however,  after examining my stoma site and he realized that this was not going to be an average trach change. Doctors have told me before that my body heals very well and so the opening to my trach is very narrow and difficult to manipulate when switching out. Reluctant to make a bad situation worse, he decided to call for assistance and so we waited another hour or so for the senior resident to arrive. Mom and I managed to have some interesting conversations, and the patient to my left was clearly around for theatrical purposes only, which was quite entertaining. Just as I started to relax a bit, the resident doctor made his way over with a daunting sliver briefcase, his senior advisor directly behind him. Every now and again an uncomfortable position is made better by the individuals involved, and this was one such time. The senior resident had such a confident yet soothing bedside manner. I could feel my heart start to race again as they began to set up supplies and unhinge the straps securing my trach in place. Putting all my pride aside, I put out an eager hand for the nurse to squeeze. 1 week away from turning 29 and I have NO SHAME in being "a baby" sometimes.  Having a hand to hold always seems to make situations like that easier! I felt a great deal of pressure as the doctor pinned my neck down and yanked out the trach tube. "BREATHE.....SLOWWWWW.....are you ok," the resident asked?! My ears were ringing now and I tried to focus on the nurse's hand, which i'm sure I had broken by this point. I tried to stay calm as they cleaned my stoma site, taking deep slow breaths. Seconds seemed like hours. The doctor now attempted to insert the new trach tube. Something was wrong. The look in his eye was a dead give away. The senior resident calmly took the tube and said, "let me give it a try." POP! I felt the warm sensation of blood trickle down my throat. It was finished. Tears streamed down my face for the second time in one night, but this time from a mixture of intense pain while also knowing that this was surely not the last time. The pain on the way home was almost unbearable, and I couldn't wait to pick up where I had left off and reclaim my position in bed. Txts from family and close friends brought my spirits up, and as we entered the driveway I suddenly felt extremely grateful to be safely back at home. There were many times that a casual trip to the hospital resulted in days, weeks, and sometimes months! I'm so lucky to have gotten this over with, and thankful that something like this didnt happen next Friday on my birthday. Instead I had to sacrifice a few hours of fun to do what I had to do. This is the life I live, and I'm perfectly ok with that!

VIDEO OF AN ACTUAL TRACH CHANGE I HAD DONE!!

***THE FOLLOWING CONTAINS SCENES THAT ARE GRAPHIC and EXPLICIT IN****** **********NATURE!!! VIEWER DISCRETION IS ADVISED************