Apologies are in order for my lack of updates to the blog! As I promised, I will try to update more frequently, especially now that I am fully able to type on a laptop once more!
I was surprisingly pretty calm about the reality of being intubated. I felt like everyone else was more worried about it than I was. My mom was recounting to others about how she almost 'fainted' because she had to step outside so a team could come in to stick a tube down my throat even though the procedure had been thoroughly explained and fairly simple. It wasn't the tracheotomy yet. I understand that as a mother, it is a terrible thing to have to go through and see, but I felt like she was being a little overly dramatic and making it a little too much about herself. Maybe I wasn't as affected by it due to my medical knowledge, but it's how I felt at the time. I understand that the way she felt and reacted wasn't wrong at all and her intentions were in the right place. It was just conveyed to me in an irritating manner. She kept talking about herself while I was recovering and I felt she could have done that elsewhere instead of me having to listen to it all. I ended up making amends with my sister who I had previously banned from the hospital because I realized that in the grand scheme of things, it was a petty fight and the fight for my life was a bigger issue which I needed all the support I could get for. My cousin, Vivian, was the one that had a heart to heart with me while I had a tube down my throat and she said that we're family and that we'll always have our differences and arguments, but we'll ultimately be there for one another when it counts. She told me to set aside my anger and save the arguments for when I am 100% again. I tearfully nodded in agreement.
Off on a tangent, but it has been really nice to be able to see Tammy again and I have seen her grow so much in this past year alone that it astounds me. The way that she stepped up and helped me out in every possible way makes me see her in a whole different light; I respect her even more so because she is fighting her own demons and yet is still willing to go out of her way to make me comfortable whenever she can. I am forever indebted to her kindness and giving heart. I love you so so much. I know we never say it to one another, but I appreciate you and nothing you do ever goes unnoticed. Jackie is another one that I am grateful for though she stopped coming in. She constantly relieved my parents of their watchful duty every Saturday when she drove up from San Diego so they could catch a break since my mom took the morning/afternoon shifts and my dad came in during the evenings and had to try to unsuccessfully sleep on a makeshift 'bed' (if you could even call it that) of chairs for months on end. I was grateful for the friends that took the time to also help relieve my family of their duties: Dan, Hieu, and Linh to name a few. Other family members did visit a few times, but not as often as my friends did. I was really disappointed with family as this was a critical condition and they chose to not support me during this dark time in my life. Dan took afternoon shifts and would help with any paperwork I needed to complete. He was my liaison as well as Linh. Hieu took over during the nights and stayed at the hospitals overnight when he could to help closely monitor me. I am forever grateful to all those that reached out and made an effort to see me and make sure I was comfortable.
My parents had just come back from their vacation from Vietnam at the end of February just as I was getting worse. I was a bit resentful that they had not come back sooner but later found out that as soon as they heard I was in the hospital, they had indeed tried to find a flight back, but due to it being during Chinese New Year, the flights were extremely limited and the ones available were completely out of budget. It goes to show just how key communication is in any relationship. I had harbored that resentment towards them for far too long during my decline before finding out the truth of what had gone on. I didn't feel like it was the right time to bring it up anyway in the midst of what was going on, not to mention I was no longer able to talk. In the Asian culture, it is normal to not talk about things. You are just expected to understand everything or be complacent and quiet. There is no communication because of a patriarchal superiority complex that is deeply embedded within the community. It is why I always end up butting heads with my father because I am independent and opinionated. I feel like women do have a say and should be treated with respect no matter what. There should be mutual respect regardless of age. Yes, my parents's wisdom surpasses mine due to experience alone, but it doesn't make my wisdom any less meaningful and should also be taken into consideration. Women should be treated as equals regardless of whether you are the 'man of the family'. There is something inherently humbling and dignifying in being able to admit when you are wrong and having honest conversations when there are disagreements, but for my father, it's his way or the highway. I hate that. He isn't always right and he is one of those people who expect too much of others. If you do something nice for someone, do it out of the kindness of your heart. Don't do it with the mindset that that person is going to owe you down the road. Don't expect them to return the favor. That mentality is so Asian and annoying to me. Unfortunately, my father and I are very stubborn and alike in a lot of ways so it doesn't make for a very healthy relationship if you could even call it one. I am nowhere near ungrateful for everything he's done for me and will gladly support him in life however I can because he gave life to me, but you shouldn't have kids if all you expect out of them later in life is for them to owe you. I grew up in an abusive household. It wasn't your typical corporal punishment implementation. Being the eldest, I was mostly on the receiving end, especially when he drank so you can only begin to fathom how I view my father and what kind of 'relationship' we have. My mother never did anything to convene and neither did anyone else. Phew, that was a load of negativity off of my shoulders!
Back to my experience with all the machines! I was monitored frequently whilst on the ventilator for obvious reasons. It was extremely intimidating and distracting being on one. The noises that were constantly bombarding me and having a machine doing the breathing for me was something I never got used to. It prevented me from sleeping. It got to the point where I was hallucinating due to staying up for days on end. I was having conversations in my mind with my friends and family who weren't even present in the room, but I could have sworn they were physically there. I started seeing a fly walking around on the walls. I had to be prescribed medication to help me sleep. We ended up finding that a combination of Ambien and Restoril was what was best for me. Even then, I would knock out for 2 hours at most before waking up again, I would never remember anything the next day. For example, due to incontinence, I had to be catheterized on and off. When I was on the sleeping pills, I would knock out and not even recall anything that happened during that time. I recall also having what seemed to be a mini seizure one night at the hospital and found my head shaking uncontrollably in a side to side motion as if I were saying no. My father freaked out on me and started yelling at me telling me to stop shaking my head and to try and communicate what I needed. Mind you, I had a tracheostomy in my throat and was unable to talk. He so was frustrated that he took it out on me and unleashed so much negative energy instead of running to get help from the nurses. I cried out of distress after, which caused him to be even more upset. I guess that's the only way he knows how to express his concerns, even though it doesn't make it right. He was always very critical of me even though nothing was within my control.
Don't get me wrong, I completely appreciate everything my family has done for me thus far. We all have our flaws, but this blog is meant to be completely honest in terms of my feelings and what I was going through. It doesn't serve to slander any one's character. I just want to highlight the good and the bad that comes along with this journey.
One night during my stay in the ICU of the neurological department floor, the nurse that was helping me suggested a means of communication as Jackie was present. She flipped over the white board with pain levels on one side and proceeded to write the alphabet out on the blank side so my sister and I could talk. That was the start of my ability to communicate with everyone who came in to visit me. We ended up refining the process by creating a system on a whiteboard we purchased. Reading lips is no easy feat. Some people were very good at it and didn't solely require use of the board and some were well, you can guess. This is what my white board looked like:
1. ABCDE
2. FGHIJ
3. KLMNO
4. PQRST
5. UVWXYZ
I was paralyzed from top to bottom with the exception of my face. I would mouth the number, then someone would point to a letter until we got to the correct letter or they were able to read my lips to speed up the process. Two blinks signified a new word. Since English isn't a strong suit for my father, he was the least patient and got flustered easily whenever I tried to communicate with him so I only ever talked to him when I really needed something. Everyone also learned to read my lips for simple things that I constantly needed. Words like: pain, suction, RT, hot, cold, nurse, poo, and pee were a constant staple that everyone was able to easily pick up on.
As I stabilized, I was forced to move facilities yet again. I never thought I'd end up in the back of an ambulance ever let alone having to be transferred to and from places in one over 10 times now! I don't even want to look at the bill for those transfers! This one was especially difficult for me physically and mentally because I was hooked up to a ventilator so they had to hook me up to a portable one just as I was getting used to the one I was using in my room! I was very apprehensive about this particular facility because of all the awful things I've heard about Kindred Hospitals in general. This very abrasive ICU nurse attended to me on the first day and I cried due to her harshness. The room was old, the television set is one of those big hunky square boxes hanging on the wall, and the volume control was out of whack where when you turned it on it would be full blast or not at all. My dad had to cover the sound coming from the remote using a lot of napkins and rubber bands to mute the sound because I was sensitive to loud noises. Not being able to be out in natural light really messed with my head. I had constant headaches and ringing in my ear. I thought I was in a never ending nightmare, but fortunately, the other nurses were more gentle and compassionate. Once I became even more stable, I was moved to the lower floor from their ICU unit and I felt like treatment was a lot better there. I had my own room wherever I went, probably due to my age.
I had a neurologist visit me during my stay at Kindred and she had also concluded that the EMG study only showed demyelination of the nerves still and not actual damage to the nerve itself. I hated the numbness I was experiencing throughout my body in addition to the paralysis because my mind would play tricks on me and make me feel like my limbs were in odd positions. I couldn't distinguish between hot and cold on my skin, but always felt hot on the inside of my body. The AC was always requested to be set pretty low and I never used a blanket to cover myself when I slept. The only way I could sleep was on my back due to the paralysis, which is completely uncomfortable and contributed to the lack of sleep I was getting even though I was on two different types of sleeping medication. I ended up going down to 90 lbs. at my lowest weight from being bed bound and not being able to eat real food. The numbness took a toll on my diaphragm and lungs. I had to be constantly catheterized and I am someone who is prone to infections because it's just my lot in life. I had to continually be on antibiotics several times throughout my stay due to getting UTIs all the time. That didn't aid in my recovery process. Each time I got one, it was a set back. The incontinence was humiliating. I worked at a hospital for a year in 2012 and have had a lot of encounters with all sorts of situations, which developed my empathy and compassion for people even further. I never imagined I'd find myself in such a similar predicament, distinctly at the age of 28. The thought of having to use a diaper for my bodily functions was a ridiculous notion and relying on strangers to give me bed baths and change me was something I really struggled to come to terms with. Involving my parents in the process was even worse because the extra helping hand was needed, but I didn't want them seeing me this vulnerable. I'm pretty modest, so seeing me so bare and helpless was a battle that I had to overcome. You end up having to concede and accept all the help you can get with this disorder.
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