So.. I woke up for real this time, was unstrapped (apparently I was a risk of pulling everything out while under the anesthesia), and was told that I couldn't move my head around because the ECMO tubes, which were basically two garden hoses coming out my neck, needed to remain in a certain position. Also, I couldn't talk. Even if I tried. The trach and vent didn't allow air to get to my vocal chords. So here I am.. freshly awake.. can't move.. and can't communicate. The drugs had worn off.. and they're talking about scary things like being suctioned (sorry for the grossness) and hooking things up to my port. I like to know what's going on.. I like to ask what meds are going in.. I like to understand what's happening. And now I couldn't because I couldn't talk, and apparently I'm not too great and mouthing words for others to lip read. It's safe to say that at this point, the honeymoon phase of the trach/ECMO duo was completely over.
This part of my journey was the longest, and hardest. I hated the trach. I regretted it so much. It was scary. I hated the ECMO. I couldn't move around. And yet, it wasn't until I experienced them that I realized what the doctor was talking about when he attempted to explain why I needed this tag-team.
DONT read this next paragraph if you get skeeved easily -- it's kinda gross.
My lungs were just too full of infected mucus.. there's absolutely no way that I would have bee able to cough out that mucus myself. On the trach, they can suction it out, and they did. They can't suction it all, but they got more than I would ever have been able to cough out on my own.. a step in saving my life. The trach also allowed for me to be on a ventilator without having a contraption hooked up in my mouth down my throat. So basically I was breathing through the vent, which was through the trach, which is the same place they suction from. They can't suction through a vent, so when it came time to suction, which was very often, especially in the beginning, they took the vent off for the few seconds they suctioned, replaced the vent, gave me a minute, took the vent off, suctioned, replaced.. etc. I know it was only a few seconds.. but I literally couldn't breathe those few seconds the vent was off.. which leads to ECMO.
Even though I couldn't breathe.. my body was still "breathing" because I was hooked up to the ECMO.. that brought some comfort in those many, many panicked moments of feeling like I couldn't breathe.. but not THAT much comfort... hahaha
Suctioning hurt a lot.. especially in the beginning. I got more used to it the more we did it.. which was a lottttt. It scared me that I didn't even have control over clearing my own cough anymore, and that something as simple as that.. something I did everyday of my life.. was now in the hands of someone else. I was completely dependent on other people to move, to cough, to breathe, to eat (couldn't eat through my mouth so I was getting food through my stomache tube), to go to the bathroom, everything.
I learned to have to small notebook and pen with me at ALL times so I could write down what I was trying to say. That's probably what bothered me most.. not being able to communicate. That scared me most of all... I could try and try to mouth what I was trying to say but it wasn't always a successful delivery. And I was tired.. I could only try so many times. I'll tell you this.. and I'm like crying as I type this.. Thank God for my parents. Besides Jesus and my salvation, they are my biggest blessings in life. They stayed with me, and advocated for me, and tried their very hardest, in their exhaustion and soreness and hunger, to keep me the "head of the team"; trying to lip-read, dealing with my frustration and undeserved attitudes, trying to make me the most comfortable I could be - knowing that comfort would never be achieved, putting on their best and most cheery attitudes even though I'm positive that's not how they were feeling just to try to brighten my day, and staying with me.. sleeping in hard chairs and waking up once they'd finally fallen asleep to help me with something.. If that's the love my parents have for me.. I can't even imagine how grand God's love is for us. Thank you, God, for giving me such a good glimpse of it, because without my parents, I would not have made it through this.
I'll go into some short ECMO stories in the next couple blogs.. but I want to leave with this.. When I couldn't communicate with anyone.. When I was panicking because I didn't know what they were doing, and scared every single time that I needed suction, there was One that I was never cut off from. Jesus Christ held onto me this entire time -- He even planned it out for it to work out for my good, and every time I was screaming silently, he heard it, and he held me a little tighter.
God always heard my silent voice because God is love.
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