This has been very tough.
It started Saturday September 10th, and has been a whirlwind since then. I woke up fine, walked the dog fine (yeap, just wait for this blog) and then boom. I was on the couch and not feeling too great, so I decided to go lay down in bed. I made it half way down my hallway when I started to get dizzy and warm and black started filling my eyes. So I hit the wall, slid down and laid there until I felt I could get back up. It didn't take too long. So I slowly got back up, went to the kitchen and then found the next wall to slide down...it happened again. A quick text to Jeremy and he was right over with juice, toast, and a helping hand. I managed to fell well enough to make it to bed for a 2 hour nap. I got up feeling OK but it got better during the day. I ended up making dinner, doing the dishes...normal things.
I woke up around 2 on Sunday with a fever, did my tests around 6 and knew I needed to call the doctors. But still not too bad I stubbornly argued just getting some antibiotics at home. Well, a then-hidden blessing, they told me I needed to come in and just make sure. Seeing as it was Sunday I had to go through the ER, and it was cramped...the Iron Man was the same day in Madison and there were plenty of people who needed attention.
They did all the normal tests, X-ray, Blood work, check heart rate, blood pressure, oxygen level. They poked and prodded three times to get an IV (I guessed it would be three pokes before and I was right...its like I have done stuff like this before!) As soon as they checked my oxygen and it as 91% I landed myself a nasal cannula of the good stuff. It helped, a lot. I had yet to see my X-ray but the 2 doctors I saw told me it looked like I had a bad case of pneumonia. Ok,I thought...lets get IV meds started...I need to feel better before the week is up, I have a talk and gala to go to!
From there Jeremy and I were escorted to a room where I would be staying for a few days. Monday morning they would be a bronc to see what type of pneumonia they were dealing with. No biggie, really in the grand scheme of things...they can fix this.
And then that fear was thrown in face, and out my mouth. I coughed up bubbly blood. "Do you guys see blood with pneumonia?!" The answer wasn't really what I had wanted. I start to get a little nervous. They hav me do PFTs and my beautiful 120% was now down to 74%. WHERE IS ALL MY GLITTER!? They took me down for my bronc and I saw my X-Ray, wow. It actually had me hold my breath and my heart started to pound, my glitter was stuck down low, covered in a cloudy white mess. This couldn't be my X-Ray, could it? And then I started to for get sleepy from the meds. I woke up thinking the worse was over.
But it wasn't.
I started to not be able to do the little things anymore. They started bump up y oxygen more and more. What is going on? I can't breathe. They bump my oxygen. They say I have to wear a face mask, ok, now I have to do high flow oxygen because regular flow isn't enough. I can't eat without my oxygen dipping down into the 80's. I can't walk myself to the bathroom and then back without the same results. And then I lay down to catch my breath, but there is nothing there. Not enough air and I get scared. I keep telling them I need more help, my oxygen isn't going above 80% now. I need to be put on Bi-Pap. They need to force the air in my lungs. They need to take me to ICU. They are in talks about putting me under, putting me on a vent and letting my lungs heal. No.
Dear Lord, of please wrap me in your arms. I mange to tell everyone that will listen that they can't let me die. I don't know how to say goodbye to everyone. I only gave Laila a quick hug and kiss...I can't die, I can't leave her. Jeremy was by my side, but how can I leave him too. My parents were on their way from MI, they can't watch their daughter die. I haven't seen my sister in awhile, I can't leave her. So much is up in the air, so much isn't finished. Please, Lord, don't let me die.
My bi-pap would beep when I would stop breathing for awhile, the nurses would come in and remind me to breathe. I had to be reminded to use my lungs. I could no longer walk. I could no longer eat. What is going on?!
Every test they performed came up negative. It showed nothing. Nothing for virus, nothing for bacteria, nothing for fungus, nothing for rejection. They can't find out what is wrong with me. How do you fight something that doesn't have a name? With everything. I was on 3 antibiotics which didn't help. So I was placed on steroids. I was put on 3 days of 500 mg/day dose and then tapper for the next 6 weeks. Praying that this would work, and now praising the Lord that it did. 2 days of being in ICU and I was able to move from bi-pap to high flow oxygen. I could stand up and take 2 steps to use the bathroom. I could eat pureed soup and drink milk. I could now talk to my family and friends when they came in my room. I was slowly healing. I wasn't begging everyone to make sure I didn't die.
I was done with two ivs that blew and a midline was placed in, only to have to not return blood when the nurse tried to hard to draw from it. why the haste you ask? Well, that nurse poked herself with my needle and needed blood from me to make sure I had no other disease she could catch. She wasn't happy and took it out on me. I was moved out of ICU at 3 am that night. Through scared, drugged, hazed eyes I shed some tears. I just needed to sleep, so I could heal. But was happy to be back in the land of all my good nurses who took care of me way too well.
The gala came and went, and my family all said they had a great time. They sent me pictures all night so it was like I was there. Jeremy and Laila took over and gave one of the best speeches I have ever heard. Yes, my 7 year old got up in front of hundreds of people and read the speech she wrote. Check it out on Facebook if you can. They did an amazing job.
The next few days were filled with tests upon tests, pokes upon upon pokes trying to figure out what was wrong. Maybe I was aspirating all my food, so I did a swallow study...and gagged through the whole things. I don't aspirate my food, that would be such a waste anyways right. Still nothing was culturing a positive. Ct scan, xrays, tests and tests and tests. But I was still getting stronger little by little, and was able to now get up and at least sit up, move to my chair, maybe even walk to the bathroom once in awhile (10 feet away)...but to me all those were victories. A few days later I put my big girl pants on and told them I was going to walk the hallway (with the only RT I really trusted...she even washed my hair, changed my shirt, and got socks for me. I was more than a patient, I was a person she cared about!) and I did. And everytime I walked farther, and a little faster. My oxygen staying at about 92% while on 70% high flow rate. But I didn't care, I was walking. And to keep my energy up I was starting to eat more (which was exhausting...like running a marathon type breathing and sweating) and for extra intake I was drinking a protein shake on top. I was determined, I was getting some fight back,
My anxiety was high, and not much would really calm me down. Poor Sunday doctors got the brunt of it when they wanted to do more tests, poke more. My potassium was high, my EKG had changed. I was done and they all knew it. So much knew it that my nurses came in just to talk. Nate just sat next to me and listened to me cry and talk. Sue came in and brought ice water. Joey came in and just talked football with me. These are good nurses. These are the ones that deserve more. I told the doctors they couldn't come in anymore. That was I was ready to go home and that everything they said was didn't make sense...I asked over and over if the extra protein shake I was drinking had anything to do with my levels being off. Instead they treated me a few times and then put me on a renal diet...with boast which I refused to drink. They didn't listen until the 4 time...I was right. Sometimes you have to be very fully aware with whats going on, and its hard.
The good news is in that small amount of time, I had gone from highflow, to face mask to now a cannula with 2 ml of oxygen flowing through. Thank you Lord! My lungs were still healing.
I didn't sleep that night, again. I made a list for 8 am when I would see my team and argue the fact that I needed to go in. 2 weeks was too long. Jeremy came as soon as he could because he knew my anxiety sent me through the roof. I told him and Laila not to come Sunday because I didn't want Laila to see me like that. I wasn't confident, I was scared and not handling anything well. My team, who had been warned, walked in and asked how I was. Followed by a you can come home...I didn't have to argue my points. But I told them I had some really good ones HA!
So we packed up, waited for paper work, waited to make sure I had enough oxygen to get us home, that a at home system would follow shortly so I wouldn't have to worry about tanks. I had to get my midline pulled, get dressed and we were out.
I cried most of the way home, just thankful that the Lords will was that I was living and going home. Laila and I were reunited again and there was tears on both ends. we didn't leave eachothers side all night, she even slept on the other couch so she wouldn't be far away from me. I had her hand and I wasn't letting go.
Jeremy's parents came a few days later to help cook and run errands, take care of Laila. It was nice to be able to still not worry about using energy. Just relearning how to breathe again. I couldn't cook or do much so we needed a little mending. 2 days after they left my Mom came to help us too, she worked her buns off PLUS made some of the best chicken! I just dropped her off today and wasn't ready to say goodbye. I didn't realize I could hate those words so much. Thanks for the help guys!
Yesterday I had a follow up appointment and all my labs looked really well! My PFTs were still at 74%, but we will never know how bad they had been in the ICU so my doctor said he was good with that, to keep doing what I was doing and see if this is my new base or if things still improve. I walked my 6 minute walk WITHOUT oxygen and now am able to do things without it. I wasn't allowed to leave the house for more than an hour at a time...now I can start doing things again. I drove today for the first time in a month. I walked the dog I wore makeup. I looked like a girl again...a human again. I have lost about 15 pounds, and am trying to work on gaining that back. Its hard because right now I am diabetic due to the medicine, so I'm trying to figure this out right now.
Praising the Lord for everything he has done for me and my family once again. This was a lesson for me in letting it be His will, not mine. A hard lesson when faced with, but once I was reminded over and over and over again to give it to Him, my brain and lungs and heart would relax. Thank goodness He is in control.
It is still a long road and I have to rest just as much as I have to be active. Tomorrow I plan on vegging out on the couch and watching marathons of Project Runway. My work literally has to be breathing...I have to remember and expand! I am still on higher dose of prednisone which means I am a crazy person, so if you see me and I kind of shy away...please don't take offense its just for everyones own good HAHA!! Thanks to everyone who have helped us this past month, we all appreciate it more than any words can say.
Enjoy this week and don't let things bother you when they are little, because those little things are just that...LITTLE. That cold will pass, the boss yelling at you will be fine, the bad grade is just a bad grade, to start a fight over something so little isn't worth it. You never know when the last moment could really be that last moment, I can tell you that I will never just give Laila a quick hug and peck goodbye anymore...even if it means we are a few minutes late!