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.
Saturday, August 31, 2013
Thursday, August 29, 2013
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.
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.
Wednesday, August 28, 2013
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.
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.
Monday, July 8, 2013
wait...
Helloooo! These past few days I've been improving! I am sitting up more, sleeping less during the day, and walking around a little more and more steadily! I have more energy, too. All good things! (Reminder: I could still use your prayers! I'm improved meaning from the state I was in prior.. I am still in need of a double lung transplant, and very weak. I don't want to be a downer .. but some people don't understand the magnitude of the disease that when I say I'm doing better.. it doesn't mean I am healed.. I'm happy to be doing better than I was but I still need a double lung transplant -- so i'm obv not in tip top shape over here haha)
Ok so now that awkwardness is over, haha I wanted to tell you how God is encouraging me. He's so nice! So.. my bestie, June, had made me a welcome home poster but unfortunately didn't get to bring it to my house for when I got home. She took a pic of it and sent it to me. I loved it but she was a lil bummed that she had planned on giving it to me that day and wasn't able to. Fast forward about a week later. June went to our church for service on Sunday as usual, but she brought the poster, and a bunch of my church family wrote encouraging and loving notes to me on it. How uplifting! Thanks guys!! After service, June came over and was thrilled to finally give me the poster she had made which was now enhanced with all the love from our church fam as well. And God, in his quiet and yet reassuring way, brought encouragement from it.
June wanted to give me the poster last week and was upset when that didn't work out. But now that she had waited the week, our church fam got to sign it and be part of it. Had June rushed, and given it to me, I never would have gotten the blessing of all those loving messages on the posters. She waited, and got to give me so much more than she had even thought of before.
I want transplant now. I wanted it yesterday lol and God just used this situation to remind me that in HIS perfect timing not only will I get what I was expecting, but he will give so much more on top of that. I can only imagine so much about my new lungs and life afterwards, and it's hard to wait because all of that seems so great for right now! But God has a plan that goes beyond what I mustered up thinking about, and to bring about that abundance, waiting is necessary. But how nice of Him to reassure me, and remind me. Like my own little personal parable haha but it's not just for me -- if you're going through a waiting period, remember to keep walking in relationship with the Lord, and remember that the waiting is just the extra fruits ripening; the extra flowers blooming; the abundance that you couldn't even think of but the Lord wants to bestow upon you. bahh it's exciting to think about the surprises he has for us!
In the waiting times.. it can be hard to draw closer to God because we don't understand why he's withholding from us what we think is the best for us. But that's when it's especially important to draw even closer to God.. Cuddle in close, and remember what he's promised.
Psalm 84:11 (NASB)
For the Lord God is a sun and shield;
The Lord gives grace and glory;
No good thing does He withhold from those who walk uprightly.
He doesn't withhold anything good from those who call him King and live like it. He doesn't withhold anything good from his children. He promises <3
So even though I'd rather have my way in my time.. I know what he has in store will be worth the wait.
http://www.youtube.com/watch?v=i6X71sXagUY -- thought of this song - check it out
I am hopeful in waiting because God is love.
Ok so now that awkwardness is over, haha I wanted to tell you how God is encouraging me. He's so nice! So.. my bestie, June, had made me a welcome home poster but unfortunately didn't get to bring it to my house for when I got home. She took a pic of it and sent it to me. I loved it but she was a lil bummed that she had planned on giving it to me that day and wasn't able to. Fast forward about a week later. June went to our church for service on Sunday as usual, but she brought the poster, and a bunch of my church family wrote encouraging and loving notes to me on it. How uplifting! Thanks guys!! After service, June came over and was thrilled to finally give me the poster she had made which was now enhanced with all the love from our church fam as well. And God, in his quiet and yet reassuring way, brought encouragement from it.
June wanted to give me the poster last week and was upset when that didn't work out. But now that she had waited the week, our church fam got to sign it and be part of it. Had June rushed, and given it to me, I never would have gotten the blessing of all those loving messages on the posters. She waited, and got to give me so much more than she had even thought of before.
I want transplant now. I wanted it yesterday lol and God just used this situation to remind me that in HIS perfect timing not only will I get what I was expecting, but he will give so much more on top of that. I can only imagine so much about my new lungs and life afterwards, and it's hard to wait because all of that seems so great for right now! But God has a plan that goes beyond what I mustered up thinking about, and to bring about that abundance, waiting is necessary. But how nice of Him to reassure me, and remind me. Like my own little personal parable haha but it's not just for me -- if you're going through a waiting period, remember to keep walking in relationship with the Lord, and remember that the waiting is just the extra fruits ripening; the extra flowers blooming; the abundance that you couldn't even think of but the Lord wants to bestow upon you. bahh it's exciting to think about the surprises he has for us!
In the waiting times.. it can be hard to draw closer to God because we don't understand why he's withholding from us what we think is the best for us. But that's when it's especially important to draw even closer to God.. Cuddle in close, and remember what he's promised.
Psalm 84:11 (NASB)
For the Lord God is a sun and shield;
The Lord gives grace and glory;
No good thing does He withhold from those who walk uprightly.
He doesn't withhold anything good from those who call him King and live like it. He doesn't withhold anything good from his children. He promises <3
So even though I'd rather have my way in my time.. I know what he has in store will be worth the wait.
http://www.youtube.com/watch?v=i6X71sXagUY -- thought of this song - check it out
I am hopeful in waiting because God is love.
Thursday, July 4, 2013
relief
I'M HOME!!!!!!!!!! seriously can't tell you how good it feels and what a world's difference it makes just to be in your own house. I cant do stairs, and am pretty unbalanced on my feet still, so I've just been hanging out on the middle level of our house, sleeping on the couch. Pip wasn't thrilled to see me.. well he was for 2.5 seconds but then he was really afraid of my o2 mask, so he wouldn't really come near me. We've made some progress and he'll lay next to me now, but he mainly follows my mom and dad around. Thanks a lot pip :[ lol just kidding - I still love him even though he doesn't love me :[ Sprocket, on the other hand, was so thrilled to see me regardless of the mask, that his tail wagged so hard it shimmied up through the rest of his body. He was/is sooo snuggy that he contorts his body into any position to be completely pressed into me. Sometimes, when we're not snugging, he just rests his head on the foot of my chair and wags his tail at me lol so cute.
This is definitely a struggle -- and that's sugar coating it. The mornings tend to be particularly hard -- especially the ones right after a really good day. For example, yesterday I did more than I have! I sat up at the table for breakfast for the first time, June and Patti visited (thanks guys!) and I even rode the exer-bike a few minutes. I knew I'd feel it today, but didn't realize how much. This morning was very hard to breathe, especially when I would cough -- it took me so long to recover from a little cough. My o2 started dropping and my body and lungs just hurt. I ended up taking a Percocet, which brings me to todays theme lol -- relief. I'm so thankful for all the ways my CF is relieved throughout the day. I feel tight? I do a treatment to relieve the tightness. Legs stiff? Take a little walk or do the bike to relieve them. Anxiety? Pain? Take a Percocet and feel the relief. In those moments when it's really bad, I feel as if it'll last forever. Then what? And I know this is weird.. but I just keep thinking there's no relief in hell. There's literally no thirst that is quenched to any degree. But with Jesus, relief abounds. Not only am I SOO thankful for the relief I'm experiencing now; that those times of extra hard breathing, extra pain, and then worry are relieved right now, but they will be forever relieved when I'm called home, or Jesus returns - whichever happens first lol. There's a song that says "He will lead me to springs of living water" and that's all I can picture today - how relieving the Living Water is. It's calm, and peaceful, flowing so gently. It's clear - theres no muck, or confusion -- just crystal clear. It's refreshing and cool. Just picture the beautiful spring running along... it's just so relieving. So today, among alllllll the things God is so abundantly blessing me with (I'll have to write a blog about that too and make sure to thank everyone for being those blessings -- someone please remind me to do that!) I am thankful for relief.
This fighter gets relief because God is love.
This is definitely a struggle -- and that's sugar coating it. The mornings tend to be particularly hard -- especially the ones right after a really good day. For example, yesterday I did more than I have! I sat up at the table for breakfast for the first time, June and Patti visited (thanks guys!) and I even rode the exer-bike a few minutes. I knew I'd feel it today, but didn't realize how much. This morning was very hard to breathe, especially when I would cough -- it took me so long to recover from a little cough. My o2 started dropping and my body and lungs just hurt. I ended up taking a Percocet, which brings me to todays theme lol -- relief. I'm so thankful for all the ways my CF is relieved throughout the day. I feel tight? I do a treatment to relieve the tightness. Legs stiff? Take a little walk or do the bike to relieve them. Anxiety? Pain? Take a Percocet and feel the relief. In those moments when it's really bad, I feel as if it'll last forever. Then what? And I know this is weird.. but I just keep thinking there's no relief in hell. There's literally no thirst that is quenched to any degree. But with Jesus, relief abounds. Not only am I SOO thankful for the relief I'm experiencing now; that those times of extra hard breathing, extra pain, and then worry are relieved right now, but they will be forever relieved when I'm called home, or Jesus returns - whichever happens first lol. There's a song that says "He will lead me to springs of living water" and that's all I can picture today - how relieving the Living Water is. It's calm, and peaceful, flowing so gently. It's clear - theres no muck, or confusion -- just crystal clear. It's refreshing and cool. Just picture the beautiful spring running along... it's just so relieving. So today, among alllllll the things God is so abundantly blessing me with (I'll have to write a blog about that too and make sure to thank everyone for being those blessings -- someone please remind me to do that!) I am thankful for relief.
This fighter gets relief because God is love.
Thursday, June 27, 2013
supa supa supa long.
This is going to be long.. Just a heads up. Also.. I've been in the hospital a week and a day.. so if you thought I was chatty and unorganized in my writings before... woohoooo this is going to rock your world. Pretty sure I'll be all over the place.
So last Monday night my parents and I were talking about me probably needing to go on IVs soon and I was going to call my doc Tuesday morning. Tuesday morning I woke up feeling like I reallyyyy needed a breathing treatment, which has become the new norm. Did the treatment, went back to sleep, woke up two hours later with low oxygen levels, kept turning to oxygen up, but couldn't sustain a good oxygen level, and our machine maxes out at 10 liters.. I was on 9. So called the doc, packed, got the o2 tanks (my parents did everything basically except the me calling my doc part and picking out my clothes haha) and off we were. I got admitted, started IVs. the usual hospital stuff. The next day or a few days later (I have my days mixed up now) everything seemed to be ok, and by that I mean nothing to be immediately alarmed about in an emergency type way. I was still needing a lot of oxygen, and wasn't really feeling better yet, but it usually takes about 5 days for me to turn around with the meds. Despite all this, I just felt like I couldn't breathe well. I asked my mom to do therapy on a particular section of my chest because I felt like it was wheezy and I couldn't clear it. Again, nothing too extreme here. My oxygen levels were improving as long as I stayed on 10liters, my heart rate was high, but in my normal range, but I just felt like I couldn't breathe. I had coughed up some blood, but I've done that before and altho it was more than I had coughed up before.. still nothing to freak out over, and I don't freak out easily anyway.. but I just really felt like it was hard to get a breath, and had to hyperventilate hardcore in order to breathe...
So ladies and gentlemen, this girl - who doesn't "freak out easily" - had her first legit panic attack. Yep.. not fun. We had done three nebs, and upped my steroids and oxygen, and I just couldn't get the breath in easier, hence bringing on a panic attack. They gave me Xanax! Actually.. I requested it lol never ever had that stuff before but figured if it worked like Percocet, I'd like it. Disclaimer - I'm really not a druggy. Anyway, it worked a little I guess, but it didn't really do very much or accomplish what I was hoping. After that episode of breathing/anxiety, I seemed to be ok. The docs told me I was allowed to walk the halls early morning, or at night (which for anyone who knows me, that means at night haha) so that I don't come in contact with any other patients. My mom and I went for a walk that night. Lots of heavy breathing, but I did it, and it wasn't awful by any means. We get back to the room and I'm in a good mood from walking and have some energy, so naturally my parents and I decide to play the best game ever -- boggle. As we're playing I had to go to the bathroom (i'm peeing like... well, what pees A LOT? insert that here.) and I coughed lightly, more like clearing my throat.. and coughed up lots of blood... and kept going. Apparently I'd be prettayyy good in a vampire film -- hint hint in case Edward is suddenly single -- altho I am team Jacob, so maybe that'd be awkward... Anyway, earlier that day I had gotten a CT scan and it showed blood in my left lung, then this happened, and so I was brought down to ICU. Apparently there are more than one ICUs, and I was in the least sick one. Anyway, after I think two days? there I got moved back to a regular floor, praise God!
Now God is good all the time.. but in my selfishness, I don't always see it.. Here's where he starts to just lavish me.
I was SOOO happy to have the heart monitors off.. they aren't a big deal, but they drive me absolutely insane. I'm on the reg floor now, have NO heart monitors, am out of ICU.. all good things! We go to our room, and I immediately forget all the ways in which God so clearly provided, and protected me this trip (and forever). I'm nervous about the floor nurse touching my port and doing it incorrectly. He comes in, knew just what he was doing.. in fact.. he's my favorite nurse thus far out of all my hospital stays! The ONLY one I truly trust with it. Moving on, after that, he says --" it's hot in here, if you want the temp changed, i'll call the techs." Ok... hold on.. a little history.. we have NEVER gotten anyone to be able to change the room temp to be a comfortable temp for me in any of my stays here. My dad even bought me a cute little pink fan this time because it gets SOO hot. So we're figuring it'll be like every other time someone's offered that or we've complained... nothing ends up happening. WRONG. TEN MINUTES later, a guy comes in.. 20 MINUTES later.. my room is bliss :] so nice and cool -- aka freezing for everyone else haha sorry mom and dad! but it was SOO nice. Then another nurse comes in and says we have to put the heart monitors back on because my heart rate is too high... NOT the end of the world here people. I cried. I had JUST gotten rid of my arch enemy heart monitor and now here comes the next.. and my heart rate really was within normal for me. After some explaining, and the floor doc looking it up, it turned out that I didn't have to wear them because my history showed this was normal. Then my dinner gets delivered and i'm listed as a diabetes diet -- this is kind of confusing, so bear with me .. I have diabetes, yes. But since it's caused by CF -- it's not type 1 or type 2 - it has it's own classification, and I need as many calories, as much salt, and fat and bla bla bla as I can get because of the CF... so restricting my diet to a normal diabetes diet actually really hinders me.. ok.. again, not the end of the world and I'm totally up in arms, ready to fight. Again, it gets worked out. God brought me out of the ICU, protected, provided, (and so many other things seen and unseen), and I'm barely into the room and already forgetting all that! But just like our merciful Jesus, he didn't get angry... He poured out more. I was in my room a half an hour.. 30 MINUTES.. and God cooled my room, gave me a trustworthy nurse, fixed numerous misunderstandings. Then to top it all off, my soul-sister from kindergarten and her boyfriend surprise visited me and brought me Crumbs cupcakes (still debating which ones are sweeter.. them or the cupcakes ;P) but seriously, they (the people, altho the cupcakes didn't hurt haha) were such a nice pick me up.. one that I didn't even know I needed, but the Lord did and put it on their hearts to come at that exact time. There's so much that God is doing, and it's just so ... bahhhh.
So anyway, is this a best selling novel yet? No? Just a novel then. Anyway, yesterday I had another panic attack. Coughed up some blood, but nothing that caused alarm, and it stopped. But then I got a pain/tightness in the left side of my chest and felt veryyy breathy. Sure enough my o2 levels were dropping a little -- still within an ok range, but it was interesting they were dropping from where they were when we hadn't changed how many liters I was getting. Anyway, they did an EKG to make sure my heart was ok, and then they said they wanted me to take Xanax. I cried. Again. I'm such a mush now! I felt like they thought I was crazy, like oh well, whatever she thinks she's feeling is just her being anxious... I didn't want to take it because I didn't think it'd do anything anyway (OH and I forgot.. after the first dose that didn't do much, they gave me a higher dose right before ICU.. and I went completely loopy like I had just woken up from anesthesia -- I don't remember much but my mom tells me I was pretty..chatty haha) so I definitely wasn't taking a higher dose again. Anyway, the docs came in and listened to my concerns and told me that wasn't the case at all! I was embarrassed to tell anyone I was feeling that way, so I had just been telling God, but then when they asked.. I figured i'd tell them. That was something else God did.. he gave me such reassurance through what they said, perfect timing, perfect words. I am SO thankful for all the docs and their hearts. Anyway, what they said was that when something is going on in the body, the rest of the body reacts and tenses and can cause more damage to whatever actually is going on. With the Xanax, it relaxes the body to lessen the risk of causing more damage. SO relieved about that. (And if all else fails, I can just remind everyone that before they told me where the bleed in my left lung was, I told them where I thought it was based on how I was feeling even when all my levels were ok.. and it was exactly where I had said .. so that makes me feel better, too. Not losing my mind people! Or not completely, at least. :P)
This time, the Xanax worked. I'm still debating if I liked it haha it did make me pretty woozy, and I slept most of it off, but it was SUCH nice sleep, and it relieved all my muscles that normally ache from working so hard to breathe. My headache, and my shoulder knots, and my back... all just relaxed and I could get comfortable in any position.. sooo nice.
Finally we are at today... WHICH HAS BEEN SO GOOD! I woke up early, not feeling tired/weary. We are starting to decrease my steroids, and I didn't have any hardcore shortness of breath episodes again, and no blood at all today. I sat up in the chair for a few hours, had a good breakfast, and felt at ease with my IVs as my fav nurse was my nurse again today. I even went for a walk! YEP! It wasn't that pleasant haha.. but I did it. It's a really weird feeling to have your legs and body be so weak when just last week you were home walking around (minimally but still). But what's even harder to grasp.. is that my legs/body aren't the problem. They could have kept going.. But my lungs were just like nope. It's my lungs that start to feel weird, and of course I breathe sooo heavily that Darth Vader has nothing on me. But it's just weird. I know I've used "weird" way to much in these few sentences but that's the only way I can explain it. Weird. I'm trying to build my muscle and strength back in my body.. but my lungs aren't cooperating. I keep trying to phrase it in a way that explains it... but I can't so I'll just stick with... weird.
BUT I didn't take as long to recover as I thought, and I'm proud that I did it. AND my lungs did feel exercised after -- which I really like, even if the work for it is rough. I guess I'm really starting to learn the meaning of being a fighter. I love that song Fighter by .. Gym Class Heroes? (sorry if i'm wrong!) -- Give me scars, give me pain, and they'll say of me this one's a fighter. -- And this isn't even the worst of it. But I'm going through fighting.
And what I love about the fight especially... is the Lord fights for me. (Exodus 14:14) And that even when I'm feeling like the fight is winning, He reminds me that "His pleasure is not in the strength of the horse, nor His delight in the legs of the warrior, The Lord delights in those who fear Him, who put their hope in His unfailing love." (Psalm 147:10-11)
It's not my strength that keeps God delighting in me. It's not my fight that keeps him lovingly, yet defensively protecting me. It's not my effort that makes the Lord eager to pour out his goodness on me, to bring me through, to lead me to rest..to lead me to victory. It's his unfailing love.
The fight will end victoriously for me because God is love.
So last Monday night my parents and I were talking about me probably needing to go on IVs soon and I was going to call my doc Tuesday morning. Tuesday morning I woke up feeling like I reallyyyy needed a breathing treatment, which has become the new norm. Did the treatment, went back to sleep, woke up two hours later with low oxygen levels, kept turning to oxygen up, but couldn't sustain a good oxygen level, and our machine maxes out at 10 liters.. I was on 9. So called the doc, packed, got the o2 tanks (my parents did everything basically except the me calling my doc part and picking out my clothes haha) and off we were. I got admitted, started IVs. the usual hospital stuff. The next day or a few days later (I have my days mixed up now) everything seemed to be ok, and by that I mean nothing to be immediately alarmed about in an emergency type way. I was still needing a lot of oxygen, and wasn't really feeling better yet, but it usually takes about 5 days for me to turn around with the meds. Despite all this, I just felt like I couldn't breathe well. I asked my mom to do therapy on a particular section of my chest because I felt like it was wheezy and I couldn't clear it. Again, nothing too extreme here. My oxygen levels were improving as long as I stayed on 10liters, my heart rate was high, but in my normal range, but I just felt like I couldn't breathe. I had coughed up some blood, but I've done that before and altho it was more than I had coughed up before.. still nothing to freak out over, and I don't freak out easily anyway.. but I just really felt like it was hard to get a breath, and had to hyperventilate hardcore in order to breathe...
So ladies and gentlemen, this girl - who doesn't "freak out easily" - had her first legit panic attack. Yep.. not fun. We had done three nebs, and upped my steroids and oxygen, and I just couldn't get the breath in easier, hence bringing on a panic attack. They gave me Xanax! Actually.. I requested it lol never ever had that stuff before but figured if it worked like Percocet, I'd like it. Disclaimer - I'm really not a druggy. Anyway, it worked a little I guess, but it didn't really do very much or accomplish what I was hoping. After that episode of breathing/anxiety, I seemed to be ok. The docs told me I was allowed to walk the halls early morning, or at night (which for anyone who knows me, that means at night haha) so that I don't come in contact with any other patients. My mom and I went for a walk that night. Lots of heavy breathing, but I did it, and it wasn't awful by any means. We get back to the room and I'm in a good mood from walking and have some energy, so naturally my parents and I decide to play the best game ever -- boggle. As we're playing I had to go to the bathroom (i'm peeing like... well, what pees A LOT? insert that here.) and I coughed lightly, more like clearing my throat.. and coughed up lots of blood... and kept going. Apparently I'd be prettayyy good in a vampire film -- hint hint in case Edward is suddenly single -- altho I am team Jacob, so maybe that'd be awkward... Anyway, earlier that day I had gotten a CT scan and it showed blood in my left lung, then this happened, and so I was brought down to ICU. Apparently there are more than one ICUs, and I was in the least sick one. Anyway, after I think two days? there I got moved back to a regular floor, praise God!
Now God is good all the time.. but in my selfishness, I don't always see it.. Here's where he starts to just lavish me.
I was SOOO happy to have the heart monitors off.. they aren't a big deal, but they drive me absolutely insane. I'm on the reg floor now, have NO heart monitors, am out of ICU.. all good things! We go to our room, and I immediately forget all the ways in which God so clearly provided, and protected me this trip (and forever). I'm nervous about the floor nurse touching my port and doing it incorrectly. He comes in, knew just what he was doing.. in fact.. he's my favorite nurse thus far out of all my hospital stays! The ONLY one I truly trust with it. Moving on, after that, he says --" it's hot in here, if you want the temp changed, i'll call the techs." Ok... hold on.. a little history.. we have NEVER gotten anyone to be able to change the room temp to be a comfortable temp for me in any of my stays here. My dad even bought me a cute little pink fan this time because it gets SOO hot. So we're figuring it'll be like every other time someone's offered that or we've complained... nothing ends up happening. WRONG. TEN MINUTES later, a guy comes in.. 20 MINUTES later.. my room is bliss :] so nice and cool -- aka freezing for everyone else haha sorry mom and dad! but it was SOO nice. Then another nurse comes in and says we have to put the heart monitors back on because my heart rate is too high... NOT the end of the world here people. I cried. I had JUST gotten rid of my arch enemy heart monitor and now here comes the next.. and my heart rate really was within normal for me. After some explaining, and the floor doc looking it up, it turned out that I didn't have to wear them because my history showed this was normal. Then my dinner gets delivered and i'm listed as a diabetes diet -- this is kind of confusing, so bear with me .. I have diabetes, yes. But since it's caused by CF -- it's not type 1 or type 2 - it has it's own classification, and I need as many calories, as much salt, and fat and bla bla bla as I can get because of the CF... so restricting my diet to a normal diabetes diet actually really hinders me.. ok.. again, not the end of the world and I'm totally up in arms, ready to fight. Again, it gets worked out. God brought me out of the ICU, protected, provided, (and so many other things seen and unseen), and I'm barely into the room and already forgetting all that! But just like our merciful Jesus, he didn't get angry... He poured out more. I was in my room a half an hour.. 30 MINUTES.. and God cooled my room, gave me a trustworthy nurse, fixed numerous misunderstandings. Then to top it all off, my soul-sister from kindergarten and her boyfriend surprise visited me and brought me Crumbs cupcakes (still debating which ones are sweeter.. them or the cupcakes ;P) but seriously, they (the people, altho the cupcakes didn't hurt haha) were such a nice pick me up.. one that I didn't even know I needed, but the Lord did and put it on their hearts to come at that exact time. There's so much that God is doing, and it's just so ... bahhhh.
So anyway, is this a best selling novel yet? No? Just a novel then. Anyway, yesterday I had another panic attack. Coughed up some blood, but nothing that caused alarm, and it stopped. But then I got a pain/tightness in the left side of my chest and felt veryyy breathy. Sure enough my o2 levels were dropping a little -- still within an ok range, but it was interesting they were dropping from where they were when we hadn't changed how many liters I was getting. Anyway, they did an EKG to make sure my heart was ok, and then they said they wanted me to take Xanax. I cried. Again. I'm such a mush now! I felt like they thought I was crazy, like oh well, whatever she thinks she's feeling is just her being anxious... I didn't want to take it because I didn't think it'd do anything anyway (OH and I forgot.. after the first dose that didn't do much, they gave me a higher dose right before ICU.. and I went completely loopy like I had just woken up from anesthesia -- I don't remember much but my mom tells me I was pretty..chatty haha) so I definitely wasn't taking a higher dose again. Anyway, the docs came in and listened to my concerns and told me that wasn't the case at all! I was embarrassed to tell anyone I was feeling that way, so I had just been telling God, but then when they asked.. I figured i'd tell them. That was something else God did.. he gave me such reassurance through what they said, perfect timing, perfect words. I am SO thankful for all the docs and their hearts. Anyway, what they said was that when something is going on in the body, the rest of the body reacts and tenses and can cause more damage to whatever actually is going on. With the Xanax, it relaxes the body to lessen the risk of causing more damage. SO relieved about that. (And if all else fails, I can just remind everyone that before they told me where the bleed in my left lung was, I told them where I thought it was based on how I was feeling even when all my levels were ok.. and it was exactly where I had said .. so that makes me feel better, too. Not losing my mind people! Or not completely, at least. :P)
This time, the Xanax worked. I'm still debating if I liked it haha it did make me pretty woozy, and I slept most of it off, but it was SUCH nice sleep, and it relieved all my muscles that normally ache from working so hard to breathe. My headache, and my shoulder knots, and my back... all just relaxed and I could get comfortable in any position.. sooo nice.
Finally we are at today... WHICH HAS BEEN SO GOOD! I woke up early, not feeling tired/weary. We are starting to decrease my steroids, and I didn't have any hardcore shortness of breath episodes again, and no blood at all today. I sat up in the chair for a few hours, had a good breakfast, and felt at ease with my IVs as my fav nurse was my nurse again today. I even went for a walk! YEP! It wasn't that pleasant haha.. but I did it. It's a really weird feeling to have your legs and body be so weak when just last week you were home walking around (minimally but still). But what's even harder to grasp.. is that my legs/body aren't the problem. They could have kept going.. But my lungs were just like nope. It's my lungs that start to feel weird, and of course I breathe sooo heavily that Darth Vader has nothing on me. But it's just weird. I know I've used "weird" way to much in these few sentences but that's the only way I can explain it. Weird. I'm trying to build my muscle and strength back in my body.. but my lungs aren't cooperating. I keep trying to phrase it in a way that explains it... but I can't so I'll just stick with... weird.
BUT I didn't take as long to recover as I thought, and I'm proud that I did it. AND my lungs did feel exercised after -- which I really like, even if the work for it is rough. I guess I'm really starting to learn the meaning of being a fighter. I love that song Fighter by .. Gym Class Heroes? (sorry if i'm wrong!) -- Give me scars, give me pain, and they'll say of me this one's a fighter. -- And this isn't even the worst of it. But I'm going through fighting.
And what I love about the fight especially... is the Lord fights for me. (Exodus 14:14) And that even when I'm feeling like the fight is winning, He reminds me that "His pleasure is not in the strength of the horse, nor His delight in the legs of the warrior, The Lord delights in those who fear Him, who put their hope in His unfailing love." (Psalm 147:10-11)
It's not my strength that keeps God delighting in me. It's not my fight that keeps him lovingly, yet defensively protecting me. It's not my effort that makes the Lord eager to pour out his goodness on me, to bring me through, to lead me to rest..to lead me to victory. It's his unfailing love.
The fight will end victoriously for me because God is love.
Saturday, June 22, 2013
i wanna hold your handdd....
So I started this blog with all the details of this hospital trip.. but I decided to save that for a later entry because 1) there are going to be more details haha, 2) i'm getting tired and i'm hoping that I might actually be able to fall asleep! and 3) i'd rather focus on how loving and nice Jesus is always - even in this.
Just naming a few things --
I had to get 4 ABGs done -- ABGs are bloodwork from the arteries which mean they are further down than regular veins... and it has potential to hurt...a lot. Mine have never ever hurt because I've always gotten them done in the pulmonary function lab of the hospital, and they numb you up really well! Unfortunately, this time I didn't go to the lab and they ordered people to come to my room... After attempts from 3 different people, it was unsuccessful and a little sore, but not terribly. God was nice, of course, and while they were trying to get the blood, He put a song in my heart, and I sang it. Its pretty crazy that God would use what is supposed to be HIS worship, to distract me from my pain, but that's just like Him.. His love is crazy good.
They wanted to send a fourth person that night, but we declined, and instead went down to the PFT lab the next day.. where it's no surprise that Gary (the greatest ever!) made me feel completely calm, confident about the ABG, and numbed my arm so well that I didn't even know the needle was in there! You know those people who just put you at ease when you see their face? They don't even have to say anything and you just feel safe and calm? That's Gary. And I can't tell you enough how I thank God for creating him and putting him in life exactly when I need him.
Unfortunately, later that night while my mom, dad, and I were playing boggle (we never got to get to the scoring part... but if we had I would have kicked their butts..not to toot my own horn or anything..) I started coughing up blood. Like pure blood without much effort. Some of you have seen me cough, and my face turns red, and I cough and cough like a cat with a hairball. That's not how I was coughing. I merely cleared my throat kind of cough, and bam! Anyway, because it was pure blood, and a significant amount, my doctor was called immediately. I also had a CT scan that day. Turns out it showed an area in my left lung that's bleeding. Bla bla bla, here I am in ICU. The doc says I'm not really sick sick that I need to be in ICU but the unit right under it, like for patients too sick for the floor but not enough for ICU, I couldn't go to because of my CF. So that's good too! Not to mention, when I went for the CT scan, they had to put in another IV to be able to inject contrast into me for the scan. They didn't take the IV out just incase we needed it for later on... and sure enough -- they're using BOTH IVs in ICU because one of my meds takes 4 hours to run and we wouldn't be able to run all the meds on one IV. God's provision shines through again!
Anyway, thanks for reading my updates for whoever made it this far -- although this is nothing compared to how long I usually write hahah. As for now .. I'm going to snack on the butterfinger (yuuuuuum!) my sis and bro in law brought me and bugles.
OH!! last thing..duh... I feel like this stay I've gotten a lot more..weak. not physically (well yes physically, but that's not what I mean), more like mentally. I want to be a warrior but I feel like im complaining a lot more, and not seeking God as I used to. I miss my puppies a lot... and just want to go home to my own things... and blaaa I could go on and on and on. Anyway, I was praying and crying, asking God to just please hold my hand. I know he is even without me asking.. but still. The next morning I read a small devotional from Jesus Calling... The devo is like a little note written from God based on the Bible.. I love it.. anyway.. what did it say? -- Focus on me so that you won't miss me holding onto your hand so tightly -- Jesus <3
Jesus holds my hand (even when i'm complaining) because God is love.
Just naming a few things --
I had to get 4 ABGs done -- ABGs are bloodwork from the arteries which mean they are further down than regular veins... and it has potential to hurt...a lot. Mine have never ever hurt because I've always gotten them done in the pulmonary function lab of the hospital, and they numb you up really well! Unfortunately, this time I didn't go to the lab and they ordered people to come to my room... After attempts from 3 different people, it was unsuccessful and a little sore, but not terribly. God was nice, of course, and while they were trying to get the blood, He put a song in my heart, and I sang it. Its pretty crazy that God would use what is supposed to be HIS worship, to distract me from my pain, but that's just like Him.. His love is crazy good.
They wanted to send a fourth person that night, but we declined, and instead went down to the PFT lab the next day.. where it's no surprise that Gary (the greatest ever!) made me feel completely calm, confident about the ABG, and numbed my arm so well that I didn't even know the needle was in there! You know those people who just put you at ease when you see their face? They don't even have to say anything and you just feel safe and calm? That's Gary. And I can't tell you enough how I thank God for creating him and putting him in life exactly when I need him.
Unfortunately, later that night while my mom, dad, and I were playing boggle (we never got to get to the scoring part... but if we had I would have kicked their butts..not to toot my own horn or anything..) I started coughing up blood. Like pure blood without much effort. Some of you have seen me cough, and my face turns red, and I cough and cough like a cat with a hairball. That's not how I was coughing. I merely cleared my throat kind of cough, and bam! Anyway, because it was pure blood, and a significant amount, my doctor was called immediately. I also had a CT scan that day. Turns out it showed an area in my left lung that's bleeding. Bla bla bla, here I am in ICU. The doc says I'm not really sick sick that I need to be in ICU but the unit right under it, like for patients too sick for the floor but not enough for ICU, I couldn't go to because of my CF. So that's good too! Not to mention, when I went for the CT scan, they had to put in another IV to be able to inject contrast into me for the scan. They didn't take the IV out just incase we needed it for later on... and sure enough -- they're using BOTH IVs in ICU because one of my meds takes 4 hours to run and we wouldn't be able to run all the meds on one IV. God's provision shines through again!
Anyway, thanks for reading my updates for whoever made it this far -- although this is nothing compared to how long I usually write hahah. As for now .. I'm going to snack on the butterfinger (yuuuuuum!) my sis and bro in law brought me and bugles.
OH!! last thing..duh... I feel like this stay I've gotten a lot more..weak. not physically (well yes physically, but that's not what I mean), more like mentally. I want to be a warrior but I feel like im complaining a lot more, and not seeking God as I used to. I miss my puppies a lot... and just want to go home to my own things... and blaaa I could go on and on and on. Anyway, I was praying and crying, asking God to just please hold my hand. I know he is even without me asking.. but still. The next morning I read a small devotional from Jesus Calling... The devo is like a little note written from God based on the Bible.. I love it.. anyway.. what did it say? -- Focus on me so that you won't miss me holding onto your hand so tightly -- Jesus <3
Jesus holds my hand (even when i'm complaining) because God is love.
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