Thursday, March 28, 2013

My BIG. part 7.

After that hellish last surgery, "the closer," my doctors gave my poor body about a week to recover without being moved much.  Physical therapy came once a day to move my arms a little and stretch my other leg, but other than that, it was pretty much a regular schedule of tube feedings (I wasn't eating and dropping weight fast), pain meds, antibiotics and bed baths.

Bed baths were pretty interesting.  On the Burn ICU, they give you a bath DAILY.  And when you're missing half the skin from one leg and your other leg and abdomen are pretty much completely chopped off, bed baths freakin' hurt.  And I would FREEZE every single time.  Depending on which doctor was on call that day, the nurses would either give me a bath in the morning around 9 or they'd wake me up at 2 or 3 a.m. in the middle of the night to give me my bath.  They were nice and medicated me first, however, nothing compares to the pain of soap and water and scrubbing open wounds.  It was horrible.  As soon as they'd start, I'd start shivering uncontrollably, teeth-chattering and all.  Every bath resulted in tears of pain, and although the nurses felt horrible, I knew it was their mission to keep my wounds clean and infection free.  At that point, any infection could've killed me easily.  As a result, my family had to gown-up and wear a mask every time they came to see me.  My favorite part of the bed bath was the warm blankets they'd wrap me in when it was finally over.  However, getting woke up at 2 a.m. for a freezing bath usually kept me up for the rest of the night.  My brilliant dad decided it would be a good idea to get me an iPad for Christmas, so I'd usually download a movie on netflix and watch it on my iPad until I could finally fall asleep again.

If I was able to fall asleep, it never lasted long.  Around 4:30 a.m., it was time for blood draws.  I had to be stuck daily and because of my thrombocytopenia and 6 IVs, it got harder and harder for the nurses to find veins.  It was normal to get stuck 6, 7 or 8 times.  One night, and I'm not exaggerating, I got stuck 15 times.  FOR AN IV!  The doctor wanted another line because I needed a few units of blood that night, and no one could get an IV.  They stuck all over my arms, several times in my feet (damn it that HURT!) and finally found a tiny vein in my upper arm.  Halfway through the blood transfusion, the IV infiltrated, and for the next 6 weeks, my entire upper right arm was purple and blue.  Literally, from my elbow to my shoulder.  It looked like someone took a hammer to my arm.  And it hurt like hell.  My dad, who is so fiercely protective of me, was not happy when I showed it to my parents the next morning. I still have quite a bit of nerve damage in my forearm, wrist and hand from the IVs.  My right thumb is completely numb and I don't know if I'll ever get the feeling back.

My dad and Jon teamed up and became tight with each other and the doctors.  They constantly watched my monitors and chased down nurses if anything was beeping.  They developed quite the relationship with my docs.  One morning, my dad had some questions for one of my docs so he tracked him down for answers.  The doctor started walking away and said that he had to get to a meeting.... instead of letting him go, my dad said "Oh that's fine, I'll walk with you."  It makes me laugh every time I hear stories about Dad and Jon and those doctors.  They wanted to make sure that I was being taken care of in the absolute best possible way.  When they felt like the ball was being dropped in any way, they weren't afraid to speak up.  Jon was almost asked to leave once when he got on a nurse for letting the monitors go for too long... a nurse told him "Sir, if you continue to get in the way of patient care, I'm going to have to ask you to leave."  It wasn't funny then, I'm sure, but picturing it now, it always makes me laugh.

After a week, PT decided it was time to try to get me up on my feet.  I was ready.... my back and butt were killing me after being stuck in that bed.  The first time they stood me up with the walker, I could literally only walk (with help on both sides and the walker) over to the chair.  Those 6 steps felt like running a marathon.  I sat down in the chair, but that was worse than walking.  Bending my leg at 90 degrees to sit in a chair was impossible.  For the next week, my PT basically consisted of me taking a few steps, sitting in the chair until I couldn't handle it (usually about 15 minutes) and then walking with the walker back to bed.  It was all very surreal.  It was becoming clear to me that I had lost most of the muscle from my right leg and I was terrified that I'd never be able to walk myself.  How could I?  I couldn't bare any weight on that leg.  I couldn't move it or lift it myself.  If I wanted to readjust myself in the bed, I had to pick up my leg with my arms and move it.  It was terrifying.

On my second day with the walker, the PT took me out into the hallway in a wheelchair and my mom followed behind us pushing the walker.  When we got to the hallway, she got me out of the chair and I walked about 10 steps or so with the walker and then sat down again.  Then, she brought out a stationary bike and put me on it.  "Go ahead and pedal," she told me.  Thinking it would be easy, I turned my legs and started to try to pedal.  I pushed and pushed but I couldn't push the pedal all the way around.  I'd get to about halfway and then could go no further.  The PT left to go get another piece of equipment, and I looked at my mom and just started sobbing.  For the first time, I realized just how broken I really was.  I'd been pretty stoic up to that point.  In fact, my mom and dad had asked me many times how I was feeling.  I felt fine, I told them.  And I did.  I guess I hadn't really realized the severity of what I'd gone through, where I was, and what it would take to recover.  I realized when trying to ride that bike that I might never run again.  I realized that I would wear scars all over my body for life.  I realized that although God spared my life, I had no idea where my life was headed.  And I sobbed.  My mom and I both did.  "I'm scared," I cried to her..  "I know, baby, I know," she said.  We held each other in that hallway and cried for a long, long time.  As far as we'd come, we were only at the beginning.

Monday, March 18, 2013

A BIG surgery. Part 6.

Wheeling into that last surgery-- THE CLOSER-- my doctors called it, was one of the scariest moments of my life.  Sure, I'd had five surgeries in the last few weeks already, but I was vented for most of them and don't remember the first two, because the sepsis had gone to my kidneys, shutting off the parts of my brain that contained my memory.  This would be the first surgery that I'd remember going into, remember coming out of, and remember the pain.  And my doctors had warned me that the pain was going to be BAD.  Skin grafting is one of the most painful types of surgery you can go through.  And I had ALOT of wounds that needed to be covered by ALOT of skin.

I could barely see my favorite surgeon Dr. G. when they pushed me into the OR.  My glasses were off and tears filled and poured from my eyes.  Dr. G. came over and hugged me.  "We've gotta put humpty dumpty back together again, Ames," he said.  As the anesthesiologist put the oxygen mask over my face and told me to breathe slowly, Dr. G. petted my hair and the sweet OR nurse held my hands.

Four hours later, I woke up to a breathing tube being pulled from my throat at the same time I was getting moved from the OR cart to a hospital bed.  I couldn't tell which pain was worse...the huge plastic tube scraping out of my already dry and sore throat, or being moved to the other bed.  IT WAS  THE WORST PAIN I HAVE EVER, EVER, EVER FELT OR IMAGINED.  It was absolutely horrifying.  My left leg felt like it was literally on fire.  All of the skin from my hip all the way down to my knee had been removed from the left leg and grafted onto the massive wound on my right inner thigh/quadricep and onto the huge divet wound on my abdomen.  It felt like I had been in a motorcycle accident where layers of skin were completely stripped off by the road.... road rash.  It was so painful that I literally could not move.  I laid there completely flat (which was painful enough.... at that point, my hips were too stiff and cut up to lay flat, so I had to sleep at a 45 degree incline.  My entire body shook violently.  There wasn't a recovery bed open, so I was out in the hall right outside the OR.  The nurse started giving me some IV pain meds but it literally did NOTHING.  My respirations were 5 because of the anesthesia as well as the fact that I couldn't hurt too much.  The nurse refused to give me any additional pain medication because my respirations were too low.  She wanted them above 10.  My throat was on fire and I couldn't talk because my mouth was so dry.  I begged her for an ice chip, but she refused.  I laid there with my eyes closed, tears falling out of the corners of my eyes and sliding down my face onto my pillow.  In my head, I cried out to my God.  God, have mercy on me... please lessen this pain.  I can't live through this.

The anesthesiologist came to check on me and was horrified that the nurse hadn't given me pain meds.  "Don't you see that she's holding her breath because she's in pain?!  I don't care, give her something NOW!  Actually, forget it, give me that, I'll do it!'  The doctor grabbed the medication from the nurse and gave it to me herself.  Again, it did nothing.  I felt like both legs had been set on fire.  I knew that day what hell would feel like.  I could imagine burning in the fires of Hell would feel exactly like this.  I knew that meds weren't going to cut it and I needed to get to my mom FAST.  I knew I needed her to lay her hands on me and pray.  I knew at that moment that that would be the only thing that would provide me some relief.  I started to beg the nurse to take me back up to my room on the burn unit.  She refused and said not until my respirations were above 10.  I started hyperventilating, trying anything breathe faster so that she'd take me back up to my room.  Finally, she looked into my eyes and saw the panic and terror and pain.  "Okay," she said.  "I'll take you back up."  I laid as straight and stiff as I could, because any jolt of movement, like the bed hitting a bump, was absolutely horrific.  I was afraid that I might not make it back up to my room alive, because my throat was so dry that I felt like it was closing and I couldn't breathe.  I pictured myself sitting in the hand of my God, him holding me and wiping away the pain.  That had become my go-to image when I was in pain or scared or sad or anxious.

We finally made it back up to my room on the Burn ICU unit.  My nurse Casey was waiting in my room for me.  When I looked over at him, he looked like an angel.  He was holding in one hand my PCA for pain medication and in the other hand, a glass of purple G2 (low-cal gatorade) on ice.  He knew how thirsty I'd be and how much pain I'd be in.  He immediately hooked up my PCA and pushed it himself.  He gave me a bolus of pain medication too.  And he held my gatorade so I could sip it out of a straw.  That sip of gatorade was literally one of the best moments of my life.  THE RELIEF!!!!  It was indescribable.  As a nurse in the Burn ICU, Casey knew what kind of pain we were dealing with.  He didn't care about holding ice chips in case I was nauseous or holding pain meds because of my resps.  I was breathing, so he was medicating.  Those Burn ICU nurses know their stuff.  They know how to take care of a pain unlike any other kind of pain.  It isn't like have a shoulder surgery or gall bladder removal or kidney stone or even a c-section.  Skin grafts and necrotizing fasciitis cause debilitating, ungodly types of pain.  I can't honestly even find descriptives to tell you what it felt like.  It was an absolute terrifying nightmare.  My mom was there.  I begged her to put her hands on me and pray.  And not stop praying.  And that's what she did.  She and Jon put their hands on me and prayed...for hours and hours.  I was weak and tried to stay as still as possible because any movement resulted in horrible pain, but I raised my skinny little arms to Heaven anyways, as if to reach out to God and beg for his help.  Tears poured down our faces as we looked to Heaven for help.  Soon, my sister-in-law came.  She found a book and used it to fan my open wounds.  The coolness of the fan helped to ease the burn a little.  We stayed like that until I finally fell asleep hours later.... my fiancé and my mom praying with their hands on reaching up to God, and my sister-in-law fanning my legs and pushing my PCA button.  God listened to our cries to Him, and slowly the pain lessened enough that I was able to fall asleep.

I knew that I had an incredible amount of pain in my future, but that night was the worst of the pain, and I had learned how to lean on God for pain relief.  I challenge you, the next time you are in pain, close your eyes and pray to God for him to help relief the pain.  Trust Him.  Allow Him to help you.  And He will.

In the days following, the nurses kept me well-medicated, but the pain continued to be insanely intense.  When I'd get to that point, we'd pray.  My mom and dad would also pick up "Jesus Calling" and just start reading passage after passage.  It worked.  I still felt the pain and it was horrible, but I lived.  I survived.  And I'm stronger now.

Even though my wounds were "closed," my journey was far from over.  I had been in bed for around 5 weeks at that point without moving.  After a week of recovery from the last surgery, it was time for me to get out of bed for the first time.  It was time to see if I'd ever be able to walk again.....

Saturday, March 16, 2013

My BIG. Part 5. PAIN.

Where I left off, I was telling you that I was about to face the worst part of my BIG yet.  I was off the ventilator.  At that point, however, I still was hooked up to a million tubes and lines.  I had a central line, 4 IVs, catheter, and NG tube (feeding tube), and those horrid wound vacs.  For about two weeks after the ventilator was off, my doctors let my body rebuild itself.  I got units of blood almost daily.  Thousands of labs were drawn.  I hadn't eaten in close to a month, so the NG tube was eating for me and I shrunk pretty dramatically.  After being stuck so many times and having so many IVs and because of my crappy blood levels, the nurses started having a harder and harder time finding veins for lines and blood draws.  Blood draws usually happened at it never failed.  At 3 a.m. I was woken up for at least an hour so that nurse after nurse could come and try to stick me and draw blood.  Average, it would end up being 8 or 9 sticks every night.  It was imperative, however, that the doctors watch my levels extremely closely, so they could make sure my body was fighting off the infection and that my kidneys, liver, heart, and lungs were on the mend.  At the time, all of my wounds were still open.  I had a 2 ft. long incision that ran from my knee to the top of my outer thigh that was completely open and exposed (to a wound vac), a 14 inch incision that ran along the inner thigh, several incisions on the knee where they had scoped, a 6 inch incision the front of my thigh, and three huge incisions on my abdomen, one which basically looks like a 3 inch deep divet that is about a foot long.  It kinda looks like a bathtub on my abdomen.  Now, when I look at them, I'm pretty used to it....but each time a new doctor or physical therapist or friend sees my wounds, there is a shocked gasp that reminds me just how different my body is now.  Sometimes, I just thank God that I lived, even though I'm dramatically scarred forever.  Other days, I look down and burst into tears.  Am I ever going to be able to carry babies with an abdomen so ripped apart?  Will I ever feel comfortable enough to put on a bathing suit or wear my running shorts?  Will my husband be able to see past all the scarring and still find me beautiful when we're married in a few months?  

Jon is phenomenal about it all.  Nothing freaked him out.  Not even seeing my mom help me with the bedpan.  My Dad recently told me that when I was on the vent, Jon would just stare at me for hours and hours.....and he'd say "Look how beautiful she is.  She is so pretty.  God, she's beautiful."  And kiss my forehead.  That image is so, so special to me.  And every time I have a day where I feel self-conscious about my scars and wounds, I picture Jon saying those things and loving me anyways.  And that, my friends, is why I'm marrying him.

After a few weeks of "rebuilding" my system, Dr. G. told me one morning that it was time to schedule my surgery to remove the wound vacs, close the wounds, and perform the skin grafts.  The plan was to take all the skin from my left quad and thigh and use to over the smaller leg wound on my right inner leg and the divet on my abdomen.  The pieces of skin that would be grafted were about 2 ft. long by 1 ft. in other words, ALOT OF FREAKIN' SKIN!  Dr. G. warned me that the skin graft would be the most painful part of the procedure and likely cause me much more pain that I had experienced thus far.  And I wouldn't be vented for this surgery.  No, for this last and final surgery, I'd have general anesthesia, which I knew from experience as a labor nurse is pretty much the worst, most painful kind of anesthesia.  I was absolutely terrified.  The night before the surgery, I didn't want J to leave.  (visiting hours were over at 9).  I was crying and wouldn't let go of him and my sweet nurse let him stay an extra hour to hold my hand and pet my hair until I fell asleep.  J had to work the next day, so he would be arriving right around the time I got out of surgery.  My mom and my Aunt Sue would be coming at 6 a.m. the next morning so they could help with paperwork and consents and keep me calm during surgery prep.  It was the first surgery that I would actually remember going into and coming out of.  You could say I was somewhat of a surgery veteran after having the 5 surgeries in the last few weeks, but I don't remember them, so I hadn't experienced this kind of fear before.

That night,  I didn't sleep at all.  It didn't help that I was woken up for my nightly bed bath (we'll get to bed baths later, they were pretty interesting)... and that I was woken up for blood draws and to drink some nasty pre-op meds.  Dr. G. also wanted ANOTHER IV started (lucky #7) in case I bled out because of the pathetic level of platelets I had circulating.  I think they were up to around 60 by that time.  I got 4 units of blood pre-op and they had many more units on hold in the blood bank waiting for me.  I was so happy to see Mom and Aunt Sue that morning.  I immediately started crying.  I was absolutely terrified.  My nurse Casey (my first male nurse who was absolutely AWESOME) was so sweet and did everything he could to keep me calm.  Aunt Sue told some stories to try and keep Mom and I laughing, because she was almost as nervous as I was.  Finally, it was time to go to surgery. By that time, I was SO SO SO thirsty from not being able to eat or drink for so many hours.  Casey brought a cup of ice water and washcloth and he kept dipping the washcloth in the ice water and putting it in my mouth.  We hid it from the anesthesiologists so they wouldn't freak out, but Casey knew what I needed and that was helping to keep me calm.  I was absolutely shaking.  Literally, teeth chattering, seizure-like shivers from head to toe.  I also couldn't stop crying.  I was terrified.  I was scared that I wouldn't wake up.  I was afraid of the pain when I did wake up, and my doctor's had clearly prepped me that this would be the most painful surgery yet.  When it was time to finally get taken back, I lost it.  Tears soaked my face and I could barely see through them.  My mom and Aunt Sue and even my OR nurse were crying.  We all hugged each other and my they ALL held me and prayed over me.  And then the doctors wheeled me into surgery...........

Thursday, March 14, 2013

BIG. Part 4.

Three months out from the depths of my BIG, I sometimes forget that my BIG is not something of the past....rather, it is still very in the present.  I got some news last night regarding my BIG that knocked me to my core.  Not going to go into details, because that part will come much later in my story, but basically it reminded me that this is no where near over.  I am not okay yet.  I'm not fully recovered.  In some ways, I'm not almost through the worst of this BIG... no.  I'm just at the beginning.  After dealing with what we are now, it was hard to pick up my macbook pro and go on with my story.  I wanted to freakin' quit.

But I got a message from someone today that stopped me from quitting.  She told me that she hadn't known what God was capable of until she read my blog.  She told me she wanted to know MY God.  Wow.  How freaking amazing and humbling and beautiful is that.

Okay, God.  I hear you.  I'll continue on with my story.  I'll continue to declare the works of the Lord.

I left off talking about what you guys were doing while I was living on a breathing tube.  Prayer chains were exploding all over the country.  My mom's church friends in Virginia were some of the fiercest prayer warriors.  They made these:

Aren't those freakin' fabulous?  I still wear mine everyday.

And they raised over $1500 to send to me to help with bills and whatever other needs I had at the time. These are women that I had never met before.  I couldn't believe it when I finally was off the vent and starting reading cards and letters and saw these pictures.  My mom's friends also ran a race in my name. I cried and when I saw these pictures.  I remember my mom giving me a stack of cards and letters and these pictures and then that check.  My mom, dad, and I sat together on my hospital bed and held each other and cried.  That people who didn't even know me would help in this way was shocking to me.  I was so humbled and so overwhelmed by their kindness.  

My work friends were prayer warriors too.  They collected money to buy me an amazing Christmas present....a comfy robe and PJ's for the hospital and a gift card to Anthropologie, my favorite store.  They each wrote cards and letters of encouragement.  The afternoon I opened up that package was an absolute sobfest.  Facebook was exploding with updates and messages and people that I hadn't seen or talked to in years dropped everything and joined the battle, begging our Father to save save my leg... to comfort and provide my family what they needed to get through it.  My best friends Liz, Erum, and Nicole were in constant contact with my family, visiting when they could, praying, providing encouragement and meals.  I am so blessed to have such amazing friends.  

My parents got into my mail and made sure all my bills were paid while I was intubated.  No questions asked, they did what needed to be done.  And God provided.  The money sent from mom's friends and her friend's from work (who sent another $850) and money from my grandpa and other family members helped pay my rent and bills while I couldn't work.  Until my short-term disability took effect, I wasn't paid for 42 days.... so every single cent was needed to make sure I was financially taken care of.  God provided exactly what was needed.  He is such an amazing God.

Necrotizing fasciitis has an 80% fatality rate in most cases.  That means only 20% of people who contract the infection die.  Most patients that live through it lose at least one or more limbs.  And because of your faith and your prayers bombarding the Heavens, God listened.  He spared my life....and my leg.  HE LISTENS.  HE PROVIDES.

When I woke up from the ventilator, I was shocked to look down and see my wounds.  My right leg on both the inside (abductor side) and outside was completely open, muscle and bone exposed.  Wound vacs were attached but it was absolutely surreal to see myself like that.  In addition, my abdomen was completely covered in scars.  A 10 in scar vertically, an 8 in scar transverse and a 12 in open wound took over my tummy.  So much for wearing a bikini on my honeymoon.  I also had to say goodbye to ever wearing shorts again that day.  Despite all that, I was eerily calm that day.  I was happy to be alive.  I was satisfied finally getting to drink some gatorade and putting some deodorant on.  It's funny how your priorities change when you almost lose your life.  

The wound vacs completely freaked me out.  I could see the black pieces of dead tissue and dried blood being sucked through the vacuum tubes and the first time I saw it, I was convinced it was bugs.  I screamed and shrieked that there were bed bugs.  (I think there was still quite a bit of sedation meds in my brain...haha).  My mom tried to explain what was going on, but I didn't believe her.  I screamed for the nurse.  "There's bugs in my bed!!!!!  BED BUGS!!!  I've seen them in hospitals before!!"  The nurse laughed and told me I was just hallucinating.  She told me a story about a time when she herself woke up from the ventilator and thought she saw a little green man at the edge of her hospital bed telling her that her husband was trying to kill her.  Drugs do some crazy things.  Drugs are bad.  

The next week to ten days were ventilator and surgery-free.  I was becoming more and more aware as each day passed and started asking lots of questions.... what happened???  what day is it?  What?? Thanksgiving already passed??  One of the weirdest things that happened after I woke up from the vent was not being able to grasp what time meant.  I had no understanding that four weeks had passed.  I thought it was nighttime when it was daytime and vice-versa.  It took about a week for me to understand what time of the month it was then and when to wake up and when to go to sleep.  

The pain was unimaginable.  They give all sorts of meds to Burn Unit patients, but this kind of pain is not well-controlled with meds.  I started to find that prayer was a much more effective medicine.  When the pain was really bad, I'd have my mom and Jon put their hands on me and pray to God to lessen the pain.  And you guys, I swear to you, it worked.  At times, it was the ONLY THING that worked.  The other helpful pain medicine was scripture.  My mom had a copy of Jesus Calling at my bedside (amazing book if you haven't read it, get it NOW.)  When the pain was really bad, I'd have my mom read passage after passage until the pain calmed and I could sleep.  We all depended on the Lord for everything.  IT IS THE ONLY WAY, GUYS.  If you take away one thing from my story, take this:  if you're going through a trial, lean on Jesus.  I know I've been stressing that He saved my life....and He did.  But He also got us through the toughest parts of the process.....the pain....the fear.....the heartache.  

The antibiotics and blood transfusions and surgeries had worked.  I was starting to mend and when there were no signs of active infection left, the doctors decided it was time to remove the wound vacs and close all my wounds (they were still open at that time).  I was about to face the worst part of my journey yet.  To be continued....

Sunday, March 10, 2013

BIG. Part 3. Details.


By my third day in hospital, I had already experienced about a million of them.  Performing one after another after another, God had set my BIG up perfectly so that my life and my leg would be saved and we would get through this.  All of us.  You and me and us and them.  My God blessed me with amazing aunts and uncles.  My Aunt Mary happens to be a dog lover, so without question, she went to my apartment and scooped up Madison, who had now been by herself for almost 24 hours.  THANK GOD for that.  Jon and I don't know what we would've done if they didn't take our baby into their home like she was their own and keep her for 2 months for us.  My Grandpa has an extra car that he was able to give to my parents to drive for the new few months as they stayed in Illinois to take care of me.  My brother and sister-in-law happen to live 15 minutes away from the next hospital I was about to go to for the next six weeks.  This allowed for my parents to be able to be at the hospital with me all the time with a free place to stay so that they didn't have to live in a hotel for two months.  My mom's job allowed her to leave indefinitely, without question, to take care of me as long as I needed...which, as we found out, would end up being several months.  Miracle after miracle.  Some might call it luck, but I don't believe in luck.  I think everything was orchestrated perfectly by God so that we could get through this horrific tragedy. Heck, even the fact that I moved up to the Chicago suburbs two years ago was a blessing....because I ended up living 20 minutes from the hospital that would save my of the only hospitals in the nation that knows what the heck to do with such a rare and deadly disease.

A major miracle happened that Monday night after my third surgery.  Things were looking worse and worse for my chances of living, with or without a leg.  The surgeon told my family that she wasn't sure what to do next and we should probably start looking for somewhere to transfer me.  She told my family that she wasn't sure if any other hospital would take me, however, because I was so critical by then, they wouldn't want to risk accepting the transfer.  My family started looking on the internet for neighboring hospitals, horrified as it was becoming more and more apparent that I was in a place that could not save me.  My ICU nurse that day happened to be my guardian angel.  When she came on shift that afternoon, she told my family that she hadn't been able to sleep the night before because she was so worried about me.  She told them that she had a friend who was a nurse in the Burn ICU at Loyola and she had heard that they specialize in necrotizing fasciitis.  Right then and there, she called her friend and told her about me.  Her nurse friend from Loyola told her attending doctor in the Burn ICU and guess freakin' what??  That amazing physician told them to get me over there.  To accept an uninsured patient is almost unheard of.  But after hearing my story and the condition I was in, that doctor wanted to save me.  Within an hour, I was in an ambulance hooked up to a hundred lines and with a ventilator breathing for me.  Jon rode in the ambulance with me and recounted to me recently how terrifying it was knowing that my fragile life was in the hands of 2 medics and a bunch of machines to keep me alive.

 My family-- all thirty of them since no one had left my side for the last 72 hours-- followed in a few cars at around 1 in the morning.  No one was leaving at that point.  My cousin Bryan (my man-of-honor in my wedding) had even flown in as soon as he heard I was in the hospital.  I cannot tell you how much it meant to me when I found out how many of my family members hadn't left my side.  The ICU waiting room was filled with pillows and blankets as they slept for a few hours at a time on the floor when they weren't praying over me at my bedside or talking to doctors.  I laugh when I imagine my fiancé, parents, brother, sisters, sister's boyfriend, cousins, grandparents, aunts, uncles, in-laws... all in the meetings with the doctors regarding my condition and plan of care.  What an AMAZING family I have.  I am so unbelievably blessed.  

When they arrived at Loyola and met the team of physicians that would end up saving my life, my family FINALLY could breathe.  The Burn ICU at Loyola is literally one of the BEST and ONLY places in the country that know how to take care of necrotizing fasciitis.  They assured my family that they knew what they what they were doing and I was in the exact right place I needed to be.  God gave me the one of the best places in the world for my illness TWENTY MINUTES from my house!  I was immediately assessed by the team.  They drew a thousand labs.  They switched out every single line I had to their own.  Two million new meds were started.  And they placed my leg in an "antibiotic bath" to assist in killing the bacteria and keeping new bacteria out.  "We got this," they told my family.  They explained that I was still very, very critical and death was not out of the question yet.  I had a long way to go and all we could do is wait and pray.  But I was in the right place now.

The next day, I was taken back in surgery...number 4 in the last 4 days.  Each surgery wreaked more havoc on my weak, septic body.  My heart rate, even on the vent, remained in the 150s.  My temp lingered around 103-104 for WEEKS.  Surgery #4's purpose was to examine, clean & debride.  My little heart kept beating, fast as it was, and I got through that surgery.  The day after that, Dr. M called my parents at 6 a.m. (they were sleeping at my brother's since I couldn't have overnight visitors on the Burn unit) and told them that I was going back in again.  Another surgery.  Surgery #5 included more cleaning, more muscle/fascia dissection and debridement.  Wound vacs were placed on each of the wounds.  A wound vac is a vacuum dressing to promote healing in major wounds. The therapy involves the application of sub-atmospheric pressure to the wound and promotes wound healing by drawing out fluid from the wound by vacuum and increasing blood flow to the area.  Let me tell you....wound vacs are the second most painful thing I experienced during my entire illness.  That pressure and pulling on open wounds is excruciating.  And I screamed when they changed the wound vacs (about every 3 days).  Luckily, I was vented for most of the time I had the wound vacs, but I was awake for one wound vac change and it was insanely painful.  I cried and cried, clenching the hand of  my Dr. G.  He kept telling the nurse to give me more pain meds, but nothing touched it.  Imagine putting a strong forceful Dyson vacuum on an 2 ft. long incision and letting it pull at your exposed muscle.  I just had to suffer through it and he angrily told the residents that they had better never touch my wound vacs again without putting me under anesthesia.

I continued to be vented for the next several weeks as my body fought the infection.  At that point, there was nothing more to do except let my body and the antibiotics fight and repair.  12 hours a day, my family sat at my bedside, talking to an Amy that couldn't answer them back.  They held me and prayed over me.  I hated being on the vent and would try pulling it out constantly until I had to be restrained.  Even then, my unconscious body wriggled all over the bed, trying to free itself.  At one point, the doctor happened to see me almost completely fight myself right off the bed, which would have ripped out my lines and breathing tube and probably would've killed me.  Even though I was a nurse, I was a bad patient.  I was in a horrible amount of pain and even though I don't remember it now (thank God), it was very apparent by my facial expressions and my movement on the bed.  Often my family would walk into my room and find one leg (completely wound vac'd, covered and splinted) hanging straight up in the air.  How or why I did that, I have no idea, but thinking about it does make me laugh now.  I always tell my family I wish they would've taken a picture of me on the vent so I could see what I looked like-- I'm a nurse, after all.  I'm curious.  They remind me that it would've been quite disgusting and morbid to take pictures of someone who might die at any moment.  But I think it would be interesting to watch myself at that point.  I'm damn lucky I don't remember it, however.

Prayers were being sent up to Heaven in droves.  My story was spreading like wildfire and God was listening and providing.  Do you want to know what you guys did to save me and us?  That comes next.  To be continued.

BIG is beautiful.

This made J and I tear up this morning.  I can't believe I didn't see this picture until today.  I LIVED. I DID NOT DIE. and I'M DECLARING THE WORKS OF THE LORD.  praise his HOLY NAME!

Friday, March 8, 2013

Part 2. Details.

Part 2.  The beginning.  (according to my memory).

I wake up.  I look around and have no idea where I am.  No idea.  My throat hurts.  Dang I'm thirsty.  Where am I?  Everything looks fuzzy.  I can't see, am I blind??  I see my mom.  "Mom, I can't see!!!  Where are my contacts?  Why did you take my contacts out?  Where am I?  What are you doing to me??"  I'm yelling but nothing will come out.  My voice is mangled and tiny from a 4 week stint on the ventilator.  Mom rushes over and grabs my hand.  "Amy, you're in the hospital, honey.  You're okay, you're okay." 

 I don't know what is going on, but I'm thirsty.  And I can't see.  "We had to take your contacts out, honey," Mom says.  "Dad is getting your glasses.  You're okay."  "Mom!!" I yell/whisper.  "I stink!  Where is my stuff?  Where is my bag?!  What did you do with my bag??"  I'm frantic at this point.  

"Mom!  Get me some deodorant STAT!"  My mom stifles a laugh.  "Okay, honey.. what else can I bring you?"  "Deodorant, body spray, and a diet coke!"  No smile on my end.  I'm serious.  
_    __   _   ___  __  ___ 

According to my parents, this is the conversation that occurred when I woke up from the induced coma.   It is also one of the first things I remember from my BIG.  Little did I know at the time, the BIG had started about 4 weeks earlier.  I don't remember being admitted to the ER on that fateful night in November.  I don't remember going through 5 surgeries in 2 different hospitals.  I don't even remember most of the week before I was hospitalized.  I was so incredibly sick that my brain and memory were affected.  So I have to tell you.... most of what I'm going to tell you next is what I've been told from my parents, fiancé, family, co-workers, and physicians.  I've pieced it together in my mind as best I can and that's how I'll tell it to you.   

It began 5 weeks earlier.  I woke up one morning and felt like I'd pulled a muscle in my quad.  I was running crazy distances at the time and working to bring down my minute-per-mile speed from 7 minutes to 6 minutes for distances of 8+ miles, so I attributed the pain in my leg to a sore muscle or maybe a muscle strain.  It hurt, but wasn't unbearable.  The next night at work, I noticed that the quad was beginning to swell and redden.  I also didn't feel that great that night.  I was shivering cold, then hot.  I took my temp at work and it was normal, so I kept working.  The leg swole more and more that night and I started to feel sicker and sicker.  By around 5:30 in the morning (I work night shift), I could barely get up.  I was drastically limping by then and felt like I had the flu.  I vomited several times in the bathroom and rechecked my temp-- 101 now.  My charge nurse Laura saw how sick I was becoming and insisted that I go home.  Day shift was starting to come on, so she grabbed the first nurse she saw and had her take my patient so I could get out of there.  I crawled home.  Once home, I took some tylenol and then rechecked my temp-- 103.  I went to bed and slept for about 18 hours on/off.  I don't remember the next few days, but J (my fiancé) tells me I didn't do much except go from the bathtub, to the couch, to the bed, to the bathtub.  He tried to get me to go to the doctor, but without health insurance (due to a new job and miscommunication about what open enrollment means) I didn't want to pay out of pocket for a doctor's visit.  My sister told me later that when she went to my apartment to check on the dog (a week later, when I was in the hospital), the apartment was littered with heating pads, tubes of Icy Hot, tylenol, advil, and ice packs.  J finally convinced me to  go to the doctor on Wednesday, as I could barely walk by then.  I remember trying to walk through the parking lot into the office and crying in pain.  The physician's assistant thought it was cellulitis maybe from an ingrown hair or bug bite....nothing resembling a point of entry was really visible on the leg, so she wasn't sure.  She prescribed me some painkillers and antibiotics and sent me home.  I don't remember anything after that. For the next four days, according to J, I continued my rotation....bathtub, couch, bed, bathtub, couch bed.  I was sick, and I knew it.... but I had no idea that my kidneys were starting to shut down... the infection was spreading...I was septic...and I was dying.  On Saturday, apparently J begged me to take me to the ER.  I refused, telling him I'd promise I'd go on Sunday when my parents drove in from Virginia.  Saturday night was the first miracle God performed on me.  

I had called in sick to work on both Friday and Saturday nights.  (again, I don't remember doing this).  On Saturday night, my close friend from work Vanessa started to really worry about me and decided to call and see how I was doing.  Something told her that she needed to call.  That something turned out to be a whisper from God.  Because we soon found out that if Vanessa hadn't made that call, forcing me to finally cave and let J take me to the hospital, I would've died that night.  The physician told me later that I was severely septic and in multi-system organ failure by that point....and I wouldn't have lived had I waited any longer.  Vanessa told me that when I answered the phone, something didn't sound right.  She told me my voice sounded weak, almost a whisper.  I stubbornly told her I wasn't going in to the ER that night and God bless her, she didn't listen to me and called J on his phone.  "Take her in NOW," she told him.  That was somehow enough for me, so I let J carry me to the car and take me to the hospital.  

The girls from my unit met me in the ER when I arrived.  Vanessa tells me it was horrifying.  I was gray.  I could barely muster a sentence.  My leg was triple the normal size.  I was dying.  Vanessa told me later with tears in her eyes, "Amy... you looked dead.

 I was quickly admitted and put on a strong cocktail of antibiotics and pain meds.  Again, let me stress, I remember none of this.  Because when you're septic, and your kidneys are failing, your brain is affected.  After labs were drawn, the doctors were even more terrified.  My platelet count was 24. 20 freaking 4.  Liver enzymes were insanely high.  Kidney function was disgusting.  Temp was around 104.  My poor fiancé was there by a little room holding the hand of his dying wife-to-be when the doctors came in and told him that my life was in danger.  They feared I wouldn't make it through the night.  And if I did survive....I'd be surviving without a leg.  Amputation would be necessary to cut the infection out of my system.  How my fiancé lived through those moments and didn't absolutely lose his mind is beyond me.  He called my parents and told them the news.  "It's not good.  There's three things it could be and none of them are good.  She's going into surgery now.  They're planning on making a 14 inch incision in her quad to figure out whether it's cellulitis, muscle compartmentalization, or the worst... necrotizing fasciitis.  Absolutely freaked and terrified, my parents jumped in the car and raced towards Illinois.  I asked my mom what they were doing and talking about during that car ride.  First, they called my brother and sisters, grandma and grandpa, aunts and uncles and started a prayer chain.  A chain that would eventually include hundreds of thousands of people praying for me.  The rest of the car ride, they prayed.  Over and over again they cried out to their Father and begged for his help.  I am so insanely blessed to have parents like mine.  Their faith in God is FIRST in their lives.  He is FIRST.  And so, when they pray, He is faithful.  He listens.  And He did.  A few short minutes into their drive, God performed his next miracle.  Apparently there was an accident on one of the main highways and the back-up was hours and hours upon hours.  God put a police officer there for my parents.  My dad explained the situation and that police officer was able to give them a backwoods way to get around the traffic.  It was basically a turn onto the dirt road- past- the- third- barn- on- the- left type of situation.  They were able to get around the traffic.  And miracle #3....God was able to get my parents to me in 8-9 hours---a drive that normally takes at least 12.  

In the meantime, J was wheeling me off to surgery.  I was crying and told him "I'm scared."  He said leaving me at that OR was the worst moment of his life.  He went back down the hall and sat alone for hours, not knowing whether he'd ever see me alive again.  

Shortly after, my brother, sisters, and sister's boyfriend Mike arrived.  J pieced the story together for them, and immediately, he had an ally.  My brother is brave.  He's strong.  And his faith is HUGE.  The two of them together met with doctors and nurses and anesthesiologists.  While my sisters and Mike made phone calls and prayed, my fiancé and my brother asked questions, signed documents, and kept my parents informed.  I can't tell you how many prayers were said that night. 

I came out of my first surgery okay.  My leg had been cut open and muscles dissected, and necrotized tissue removed.  The surgeon was in over her head.  She was a ortho and had never dealt with necrotizing fasciitis before.  She kept telling my family, I don't know if we can save her.  I'm not sure what we're dealing with.  I think we need to amputate.  Matt and J became more and more concerned that she didn't know what she was doing.  What was terrifying was just become even scarier.  

Shortly after the first surgery, a doctor palpated my abdomen and noted that I was feeling pain there too.  Fearing that the infection was spreading to the abdomen, they took me back into surgery.  Sure enough, the infection was now in my abdomen and pelvis.  More muscle and fascia and tissue was removed.  When I came out of that surgery, my body was in trouble.  The trauma of it all and the pain and my weakening systems caused me to breathe rapidly....for HOURS.  For 8 hours, I panted...respirations in the 60s.  My heartbeat was around 160 and J said he could see my jugular vein palpating disgustingly fast.  It was as if I was running a marathon in a dead sprint...a marathon that went on for hours upon hours.  At one point, J yelled to the nurse, "Why aren't you doing anything?!!  She should be vented!  She can't breathe like this, she's going to die!! DO something!"  The doctors were worried that I was too weak to handle the sedation, so I continued my marathon to stay alive.  

The next morning, I was taken in for my third surgery.  This time, the anesthesiologist told my family... "She's going in with the vent and when she comes out, the vent stays in."  I remember the minutes before this of the only things I remember at all for the first four weeks.  I remember being SO THIRSTY.  I begged for something to drink, or just ONE FREAKING ICE CHIP.  I was sobbing and begging everyone there.  I remember the nurse physically pained her that she couldn't help me.  My mom lost it then.  Seeing me that way, so scared, in so much pain and begging for mercy...she walked away sobbing.  My family held each other and sobbed during that surgery.  

God kept me alive, and what do you know, I came out of that surgery.  The physician who wanted to amputate and somehow decided that she was in over her head and didn't want to cut anymore.  She was ready to send me off to someone who knew what to do.  And that night, God performed another miracle.  To be continued...

Thursday, March 7, 2013

something BIG. Part One.

A few days ago, I vented in my blog about my something BIG.  I called it "little blog post" because to me, it was just a few scattered thoughts complaining about a physician who had crushed my spirit about my BIG.  She told me that I'd never run a marathon again, and I should give up on that dream.  When she told me that, I felt my heart physically ache.  I felt like I had gotten punched in the stomach.  And then I wanted to punch her in the stomach.  I left her office in tears, and jotted down my thoughts later that day.  Turns out my little blog post about my BIG wasn't so fact, it became quite BIG.  4,142 readers BIG within the first few days.  Then God spoke to me....Amy, look at who you can reach.  You write your words and I'll make them BIG, He said.  It was like the story of the bread and fish.... God took such a small meal of loaves and fish and stretched it to feed the thousands.  All of a sudden it became clear to me that what I tell you about my BIG can really be made BIG once God gets ahold of it.  In fact, God took ahold of my BIG long before it was BIG.  He was there from the beginning, and to this very minute, He is taking care of me and allowing me to be a part of His miracle.  And I'm pretty damn lucky for that.  How can something so horrible and tragic be a miracle?  I know, I know.  Trust me, most days the last thing I'd call my BIG is a miracle.  Then again, I don't see things  as BIG as God does.  I'm going to tell you this story, my story, my BIG... and you decide.

Part 1.

Heaven wasn't what I thought it would look like.  I pictured a bright, bright white palace.  A palace made of gold and diamonds and precious stones more beautiful than we ever could imagine in our little people minds.  I imagined a HUGE GOD sitting on a throne....and I imagined tiny ol' me sitting in His hand.  That's my favorite image of God.  And when the pain in my legs is crushing and tears form in my eyes and my teeth clench, that's the image of God I picture.  You are holding me God, I tell him.  Take this pain away.  Please Lord, take this pain away.

What Heaven was...what I remember, or dream, is brilliant, bright, amazing colors.  What I remember, or dream, is walking towards those colors knowing Jesus is behind them.  What I remember, or dream, is being gently pushed away.  What I remember, or dream is a whisper....go back. It's not time yet. Open your eyes.  Open your eyes.  And I try to open my eyes, but I can't.  I try harder to open my eyes, and I think they're open and I'm awake, but then I realize that they aren't.  It's a trying to open my eyes, thinking they're open, then realizing they're not.  Getting closer to death and trying to open my eyes, trying SO hard to open my eyes.  I open my eyes.  It was just a dream.  Or was it?   Dr. M. asks about my dreams.  I tell him this dream that I have over and over.  He looks at me and tells me, Amy, those are flashbacks.  That was really happening to you.  You were dying.  You were dying for weeks.... you were fighting the strongest battle you've ever fought to stay alive.  So Amy, those dreams.... those are real.

I'm getting ahead of myself.  That was the most intense part of my BIG, but there's much more to the story.  If I'm going by memory, however, this part is first.  When I try to remember everything about my  BIG, the first thing I can remember looking back is this glimpse of Heaven.  In the general timeline of the BIG, I can't tell you when exactly it took place, but to me, it was the most important part....right?  The life or death part.

There's a lot that happened before that.  And a lot that happened after that.  But before I tell you those things, I thought I should tell you what I consider to be the BIGGEST part. What will come next is the BEFORE part of the BIG.  It's interesting and terrifying and sad and happy.  I'm going to take you on this journey because I want you to see how God carried me through this BIG....and He was there for the before part.  Are you ready?

Friday, March 1, 2013

Something BIG.

I have to tell you what happened today.  What hurt today.  I haven't written since November, and when I looked back at my last post, it was haunting.  My last post asked for prayers for a "health scare."  Little did I know, I would need all the prayers I could get over the next four months.  Because that last post was written right before something BIG happened.  Before that post, I wasn't a person that had ever experienced something BIG.  Now I'm a person with a BIG.  I could go on American Idol and have a sob story and describe how I got through it and how it changed me.  Before that, I could never have been on American Idol.  Now I can... So, there's that.

But I digress.  I'm not writing today to tell you about my something BIG.  I promise you, it will come.  I'm not sure yet how to write about my something BIG, because it deserves such BIG words and I can't find them yet.  I've been asking God how I should go about telling you about my BIG, but He hasn't told me yet.  I know that He chose me to go through this for a reason.  And it's not so I can go on American Idol (honestly I can't sing, so it wouldn't work anyways).  There's a purpose and I'm looking for it.  When God gives me the words and the strength to write the words as BIG as they should be, I promise you I'll tell you about my BIG.  Today I'm writing to tell you about something else.

My BIG hurt me in many ways.  I'm forever changed because of my BIG.  But one thing that my BIG can't change is my heart, and what is in my heart is my running.  I'm a runner, a marathoner.  It's who I am.  It's part of me.  It's part of me that I wouldn't recognize myself without.  When I first got sick, my fiancé and my parents were told that I wasn't going to live.  They were also told if I did live, I would definitely lose my leg.
My fiancé went through 48 hours realizing that if he was lucky enough to keep me at all, he was going to forever have a wife with one leg.  I have a special hubs-to-be.....because my love wasn't worried about having a wife with one leg and how it would affect him....He doesn't think that way.  My love is selfless.  He'd love his wheelchair wife just the same.  He was worried that if he was lucky enough to keep his wife alive, he would have a wife with one leg that also didn't have a heart anymore....because running is her heart and without a leg, she couldn't run, and therefore, she'd lose her heart.

You know what?  God kept me alive.  I could see him, you guys, I could.  He turned my little butt right back around and put me back on earth.  And guess what else?  A million people prayed.  And all of their friends prayed.  And He listened.  And He let me keep my leg.  It's a different leg now.  It's scars will forever remind me that I was insanely close to Jesus but He gave me more time.  And I got to keep my heart too.  My doctors at Loyola told my fiancé, family, and myself that if I work hard, I'll make a full recovery.  I'll run.  Dr. G told me he's coming to my next marathon.  I told him it might be in Hawaii, because my leg deserves to run a marathon in a pretty place.  That marathon will be hard on my scarred leg.  Those 26.2 miles will hurt her, and she'll deserve something pretty to run on, like white sand.  Dr. G said, that's ok.  I'll come to Hawaii.  Dr. G is pretty damn fabulous.

Today I saw a different doctor.  One of the first surgeons that took care of my BIG.  She tried to tell me that I need to dream smaller.  She told me my leg won't be able to run a marathon.  It hurt, you guys.  My leg was pretty upset too.  She knows deep inside, she's the same leg, she's just a little different now.  She just looks a little different, and she's not quite so strong, but she's working so hard to get there.  She knows, and I know, I'll run a marathon again.  I'm the hardest worker there ever was.  God kept me here, and He knows what's in my heart.  He would never take that away from me.  My other doctors and physical therapists tell me of course I'll run, and heck yeah I'll run a marathon.  This doctor told me I shouldn't have such big goals.  I left the office in tears.

I just wanted to write this down, because someday I'll be running a marathon on that leg that that doctor cut into and didn't believe in, and I want to print out this story and show it to that doctor.  And tell her that she should never tell a girl with so much heart to dream smaller.  I'll run that marathon....and I'll send her my race bib number in the mail to hang in her office.  That way, she'll learn.