When the drugs wore off...

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.

Transplant: Well Hello ECMO

So... bi-pap worked for a few days but the next thing I knew here came the doctors walking into my little cubicle room again.  Bi-pap worked, but not enough and it was time to make a move with ECMO.  They wanted to put it in that day because as the doctor explained to me, "old people run and run and then start to slow down before they crash.. young people run and run and run and then crash... there's no way to tell before they go off the cliff."  We talked and I knew it was the right decision, although I didn't voice that to anyone else yet.  Before I could be the responsible adult that I am and tell everyone I decided to do the right thing and get ECMO, another doctor came in and told me I also needed to get a trach. 

Ok.. Rewind two days before -- my mom and I were talking.. we must have seen some smoking commercial or something with someone having a trach because somehow that topic came up.  Because of the severity of CF, it was decided years ago that if an instance came up that I can't communicate for myself, my parents make my medical decisions for me. And TWO DAYS before the doctor informed me I needed a trach this is what I said.. "Mom, I never want a trach.  If they ever want to put a trach in me, say no."

And now here I am being faced with the one procedure I said I never wanted.  It was a lot to handle and so I whipped out my phone right away and texted MY doctor who came in as soon as she could and explained to me why this was the best choice.  We made the decision to go for both the ECMO and the dreaded trach.

 I can't remember being prepped for surgery or going in or anything.  I DO remember waking up just for a second after surgery.  I opened my eyes and I didn't feel like I was working to breathe.  Actually.. I really didn't think I was breathing.. It was like I was living without having to breathe.. So of course I asked -- Am I breathing?  Now if you were me, this was a legit question but everyone else thought it was funny.  They told me I was and all I could say was "It's nice."

ECMO and the trach which was hooked up to a vent were breathing for me.  That combined with the wonderful drugs they gave me to knock me out and for pain made that hospital bed so comfortable, so I just closed my eyes and went back to sleep... breathing - maybe not in the traditional sense of using your lungs and all but as it turns out I'm not that traditional. 

 Fun fact - not every hospital has ECMO -- in fact.. most places don't know what it is.. But I can tell you what it is.  It's the machine that ended up saving my life. (ok, ok.. the trach was part of the life saving too as much as I hate to admit that).  It's no surprise to me that God sent us to NY Presbyterian Hospital.. because even before Jesus saved my life the first time, he knew he'd save it again through this machine.

I had my first life saving operation that day because God is love.

Transplant: This is how it starts...

Helllooo!  So I want to blog my transplant experience.  For those of you who don't know, I received a double lung transplant on July 31st into August 1 (I went into surgery the night of July 31 and came out the morning of August 1).  But there was sooo much more that happened than my actual transplant, and I thought some people might be interested in reading about it.. and even if no one is, I want to write it anyway to be able to look back and remember every wave of this storm that Jesus brought me through.  The waves, however, didn't seem to end and because this perfect storm is going to be my longest blog ever (and that's saying something!), I'm going to break it into parts and write about a part each day.  I'm debating adding pictures -- nothing gruesome but I don't want to upset anyone.  So if I do add pics, I'll put them at the very bottom with a warning :]

Ok.. Here we go.

Hospital trip round 1 I already blogged about -- it was when my lung was bleeding and I was in ICU and then came home yaya!  Unfortunately about a week or 2 (sorry my times are probably going to be a little off) after being home, my oxygen went very low even with the supplemental oxygen on.  I stood up one day, and my o2 level dropped to 72.  We couldn't get my oxygen to stabilize at a good level, and I needed to go to the hospital.  The problem was that I was now on 18 liters of o2, and the tanks we had wouldn't last long enough for us to get to NY.  Our options were to be admitted to a local hospital, which is dangerous because local hospitals aren't well informed about CF, or go to the local hospital and be transported to NY.  We wanted to just take an ambulance, but they can only bring you to the nearest hospital.  Bah... What to do?  Well, surprise surprise -- enter God.  God blessed me with an amazinggg friend -- June :] she's an EMT and when we started getting serious about waiting for the call for lungs, she set up everything with her squad and got permission from the higher-ups to be able to use once of their "rigs" to transfer me to the hospital should we get the call.  Well, we didn't get the call but we did call June!  June and her squad came to the rescue haha  I was brought to NY in an ambulance with my mom on my right side, and my best friend on my left. What a blessing to have June be doubling - and what I mean by that is I was holding the hand of my best friend and more than capable EMT at the same time. I can't tell you how that relieved so many fears. Thank you God for June, and thank you June <3

My dad followed the ambulance in the car with all our stuff, and something extra.. Johnny! (thanks Johnny <3)  We hung out in the ER for awhile as we waited for an ICU room to open up, and then went to ICU.  Tiny rooms, but I guess I wasn't exactly going to throw a dance party while I couldn't breathe anyway.  I don't know how many days it was until one of the transplant surgeons came to see me.  He and another doctor said I should go on Bi-pap - not a huugeee deal .. but still alarming enough. He also mentioned something called ECMO - and that it was a possibility if the Bi-pap didn't turn things around, but let's try bi-pap first and see what happens.

My nurse Sarah -- who was awesome by the way, showed me pictures of the ECMO machine and explained it a little just so we knew the basics of what it was, but again said -- don't worry over this because we don't even know if you'll need this -- but God knew.. and just like himself, he was sweet.. there were a few times that God spoke to my heart during this trial, and this was the first one. "Brace yourself, because you're going to need this."


I was blessed while being prepared for battle because God is love.