Monday, April 22, 2013

BIG. Part 9.

After a few weeks of very minimal PT ( the PTs came to my room and would get me up in the walker and I'd make a lap around the nurses station and then have to sit in the chair for as long as I could stand it-- usually about 15 minutes was all I could take), the team started talking about rehab.  Obviously, I had no strength at all in my right leg (most of the muscle and tissue had been cut out of the leg), and decreased strength in my right leg from begin in bed for four and a half weeks.  I still had the feeding tube and was eating almost nothing, and still in a ton of pain.  So it was obvious that I was in no shape to be discharged home and would need some sort of inpatient rehab.

We learned from the burn unit's social worker that Loyola has a tremendous inpatient rehab program.  The problem was, only 5% of the patients who want/need services on that unit are accepted.  It's a relatively small program, and a big hospital.  So besides the fact that there was a 95% chance of not getting accepted into the program, we also knew I was uninsured, which we figured would go against us.  We all prayed constantly that I would be accepted into this program...for several reasons.  One reason was we knew it was an amazing rehab program, and it would be much easier that leaving the hospital I'd grown to know and love and have to go to a completely different facility.  Another reason was, we were afraid that many programs may not accept me due to the fact that I was uninsured.  Also, we were worried that I might end up in a nursing home somewhere with all the horrors that you hear about nursing homes.  I was terrified to leave the burn unit, but I was even more terrified to leave Loyola completely.  So day and night we'd pray that somehow God would allow me to be accepted into that rehab program.

God stepped right in, and despite all the barriers in the way, I was chosen as one of the 5% to be accepted into the inpatient rehab program at Loyola.  HUGE prayer answered!!  God is SO GOOD.  I don't know what my doctors and social worker had to do to get me in that program, but they are absolutely amazing, and by the grace of God I got to go there.

Although it was amazing that I was going to be discharged from the Burn ICU to Loyola Inpatient Rehab, I wasn't exactly thrilled to be leaving my home in the ICU.  My doctors were like family.  My nurses treated me like I was one of their own.  They had saved my life there, and there was trust and safety and security there.  I had a little schedule, and I had grown quite comfortable living it.  I was terrified to leave there and go to a unit where they didn't know me and my experiences, they didn't know my pain, they didn't know how to take care of necrotizing fasciitis.  Would they know how to bathe me how the burn nurses did?  Would they have warm blankets to wrap me in?  Would their TVs have VCRs?  Were there even nurses at all on rehab or was it just physical therapists?  So many thoughts were running through my mind.

In the meantime, I was continuing to recover slowly.  The pain hadn't decreased much since the last was still quite horrible.  They had turned my IVs off and started me on oral pain medications, except for before my bed baths.  The pain of my wounds getting washed was too much to bare, so the doctors ordered that the nurses give a dose of IV pain medication before the bath for me (and for all the other burn unit patients).  One time, a nurse forgot to give the patient across the hall her meds first, and I heard the patient screaming in pain.  It was terrifying.

On my last day in the burn unit before moving to rehab, I had a new nurse who didn't work there much....I didn't know her and found out later that she was agency.  That morning, she came in and said it was time for my bath.  However, she wasn't going to give me my normal bed bath-- instead she wanted to take me to the "shower cart."  I had no idea what the shower cart was, but I didn't argue and just decided to go along with it.  I should've known it was going to be bad when she didn't give me the pre-bath meds.  She said that since I wouldn't be in bed for the bath, she didn't want to give me any meds.  She didn't want me to get dizzy in the shower cart and pass out or something.  I was terrified.  I knew how painful the bath was WITH the meds.  Again, I just decided to go along with it.  My mom got there just in time, and went with us to the "shower cart" room.  I actually walked there with my walker.  When the nurse opened the door, I started trembling with fear.  It looked like a freakin' concentration camp.  That's the only way I can describe that room.  There was two metal square carts, next to each other, and immediately I realized that this was the debridement room-- where burn victims were taken to scrub and clean their wounds and remove the dead skin.... this was NOT a shower!!  I told her I wanted to go back to my room, but she insisted that I had to have my bath there.  She made me climb up in that cart (which was literally impossible) and then tried to make me lay down naked on that flat metal cart.  First of all, I couldn't even lay was impossible.  I was cut all the way up to my hip and all over my stomach, so I had to lay at a 45 degree angle most of the time.  She yelled at me to lay flat, but I told her "no" and just leaned back on my arms.  HORRIBLE.PAIN.  Then, she turned the water on.  You would never freakin believe it, guys.  There was a little hole in the cart where a hose came through and tricked out COLD, ICE COLD, water.  "AHHHH!!" I cried.  "No, no, this is freezing!!  Please make it warmer!!"  My mom wrapped me up in a towel and literally held me in the fetal position while the nurse hosed me down with ice cold water.  I was sobbing in pain and freezing.  I was shivering uncontrollably.  The nurse kept saying, "Its warm. It doesn't get any don't think its warm enough?"  "No!!" I cried.  "No!" My mom cried.  "This water is freezing!!"  Finally the nurse found a bucket and started leaving the room, going across to a different room, filling up the bucket with warm water, and then coming back in and dumping the warm water on me.  Honestly, it was the second most horrible and painful moment of my entire hospitalization.  I sobbed and shivered and hugged my mom like I was a little girl again.  The only thing my mom and I can compare it to is a concentration camp.  We were horrified.  In the middle of the bath, my mom finally lost it and said "Forget it!!  We'll wash her hair in the bed!  Let's just get back to the room!"  She basically lifted me out of the cart and helped me back to my room, and we finished the bath and washed my hair in my hospital bed.  Thank the good Lord I never had that nurse again.

When I was walking back to the room, crying and shivering, the social worker saw us and told me I was headed to rehab that day.  Needless to say, I was not happy.  All I wanted to do was get back into my bed and cover myself in warm blankets and get the medicine that should've been given to me in the first place and sleep for the rest of the day.  I did NOT want to go to a brand new unit where they were gonna put me through 4 hours of physical therapy a day.  I did not want to leave my doctors who treated me like I was their own daughter.  I was just plain terrified.

But rehab was another step closer to home... and home was my ultimate goal.

Tuesday, April 9, 2013

BIG. Part 8

Today was a hard-freaking day.  Some days, it's easy to wear a smile and push through and see the good in all this.  Today was not one of those days.  Today my leg hurts, my abdomen heart hurts.  I feel so damn disconnected from the world, sitting in this house trying to recover.  People might complain about having to go to work, but until you're forced to stay home, alone in a world of aches and pains and nightmares and realizations of how you're so freakin' different now, you don't realize how grateful you should be to be able to work.  It's lonely here.  I miss my friends.  I miss my patients.  I miss me.  Today I looked at bathing suits online for our honeymoon....and the more I looked, the more mad I got.  Sometimes I just get pissed off.  It's not fair.  I'm 29 years old and I'll forever look like I've been in a knife fight.  Somedays I shrug it off, and somedays I look down and then breakdown.  This post might be a little angry.  A little explosive.  A little sad.  As I'm writing right now, I can barely see the screen.  It's blurry with tears of frustration.  I hope that by the end of today's post, I feel a little healed.  Thanks for putting up with the hurt I feel today.  I'm sorry to vent.  I promise I'll be back to being chipper next time.

Back to the story.... When I left off, I was telling you about that first week post-op after the closer surgery..the worst surgery.  Not only were the PTs around trying to get me moving a little, out of bed, to the chair, back into bed, but they started having me take little walks with the walker around the nurses station and back.  The first day I walked with the walker, my mom was transported back to her early 20s, with the video camera, watching her little girl and waiting for her to take her first steps.  My dad had just started a brand new promotion at his job in Virginia, so he was flying back and forth daily and weekly.  In the meantime, my mom videoed everything and called him 40 times a day to update him on everything that was happening.  My dad HATED being away.

When I got up on the walker for the first time and made my way around the nurses station without the PT holding me up, my mom followed in tears.  She was SO HAPPY!  I felt like a toddler who had finally let go of the couch or table and actually walked alone across the room before falling on her diapered bottom.  PT was FREAKING hard, let me just tell you.  I hated it when they walked in the morning, ready to put me through hell.  Hell to me at that point was getting out of the bed, standing there, taking a few steps, and sitting in a chair.  My affected leg has basically no muscle at all-- it had all been dissected out.  Plus, I was extremely weak after being in bed for 4 weeks on a ventilator.  Besides the PT, the rest of those days were rather fun, actually.  I'd watch funny movies with my parents, take frequent naps, and wait for nighttime, when Jon would come to the hospital right from work as well as my brother and sisters.  Everytime I'd see my brother Matt walk through the room, I'd get the biggest smile. My brother and I have always been tight, and he was a VITAL part of my hospitalization.  He, Jon and my Dad had the docs on speed dial and had frequent meetings to discuss the plan of care.  Matt always gave me a big bear hug, a kiss on the head, and something to make me laugh.  Jon would usually climb in bed with me and just falling into him was enough.  Having him there would finally make me relax, and I usually feel asleep shortly after he arrived.  He brought me a sense of calm and a sense of home.  My sisters brought me countless treats, movies, diet cokes, magazines, and beauty supplies.  They painted my toenails and fingernails, washed and braided my hair, and filled me in on the celebrity gossip I was oblivious to.  I remember when the told me Kim Kardashian was pregnant, I yelped so loud, the nurse walked in.  Then the four of us, me, Jess, Anne, and my nurse gossiped for about an hour about Kim & Kanye, the divorce, that crazy ex-husband, etc.  It was hilarious.  All of these things sound simple, but they kept me sane, and alive.

Besides PT, the other major battle I was fighting that week was food.  The doctors had advanced me to a regular diet, although I was still getting 24/7 tube feedings....which is basically nutrient filled mush that goes through a tube in my nose directly into my stomach.  As a result, I was FULL all the time.  Even though I was still dropping weight, the LAST thing I had was an appetite.  Plus the fact that there was a tube in my nose made it difficult to eat in the first place.  When my food trays came at each meal, my parents basically spoon fed me as many bites as I would take, which on a good day would be 3 or 4.  The food was disgusting, and every food that I used to like changed after I got sick.  It was so weird...waking up and having a completely different taste in foods.  Now, pretty much the only thing I eat is peanut butter and jelly sandwiches and low-calorie gatorade.  Occasionally, I can stomach some soup.  Other than that, still to this day, there isn't much I want to eat.  Every day, I had a stand-off with the Nutritionist.  She'd come in, fight with me about what I didn't eat, what I should eat, what I wanted to eat.  Each day, I begged her to stop the tube feedings, that they were making me full.  We never got anywhere.  She always left in a huff and I kept eating little to nothing.  One day, she brought in these Ensure juice boxes which were supposed to add 200 calories to each meal.  I HATED THOSE DAMN THINGS.  She made me write down everything I ate, so I started finding ways to hide the ensure juice box.  At first it was hard, because I couldn't get out of bed by myself to dump it down the drain in the bathroom.  So I'd pour all the milk into my cereal bowl and then pour the ensure juice into the milk carton so it looked like the juice box was empty.  There was a dresser right next to my bed, so sometimes I'd hide them in the dresser under my clothes.  When I was finally discharged my parents were cracking up, as they found about 20 of those ensure juice boxes in my drawers.  And wouldn't you know, that nutritionist never found out that I wasn't drinking them.  When I was transferred later to the rehab floor, the nutritionist from the Burn ICU told the rehab nutritionist that I LOVED those juice boxes.  The rehab dietician said, "What?? How did you get her to drink them? She won't drink them for me!"  "Oh no," Burn Unit Dietician said.... "She loves them.  Keep giving them to her."  They kept giving them to me, and I kept dumping them out.

About 2 weeks after the closer surgery, the nurses took out my catheter.  I was thrilled to get that thing out.  The only problem was, now I had to walk all the way to the bathroom every time I needed to go.  It was like a 30 minute trip every time.  Plus, I'd have to put on my call light and wait for someone to come in and help me get out of bed and into the walker.  I finally learned to get out of bed and to the bathroom on my own one morning, because a nurse got me into the bathroom and forgot about me there.  I sat there for over an hour waiting for someone to come help me get back to bed.  No one came.  So, I steadied my arms on the wall bars and pushed myself up and grabbed onto that walker.  The walk back to bed seemed like a marathon.  One step.......push........two step.......push...... I pushed my way all the way back to bed.  Getting back on the bed was an even bigger hurdle. i had absolutely no muscle strength in my legs to push myself up, so i grabbed the side rails and used what little strength in my arms to pull myself up into that bed.  My arms and legs shook for ten minutes with fatigue afterwards.  But... I HAD DONE IT!  I had walked by walker by myself.  I couldn't wait to show my family!  Obviously tears were shed that day.

And so it went.  Everyday I did something a little bigger, a little better.  Each day, another tube came out.  One day, Jon came in and I wasn't hooked up to the cardiac monitor anymore.  He freaked at first, because he was so used to the beeping and it was our security blanket, that monitor.  But seeing me "free" was a huge step.  He smiled a real smile.....something I didn't see much of during those weeks.  Jon told me recently that although he appeared strong to everyone else, his own head was battling itself and he wasn't in a good place.  None of us were, I guess.  But, we kept trudging forwards.  As I got better, the word "rehab floor" started getting thrown around, and I heard it, and it terrified me.  I was still in too much pain to imagine leaving the security of the burn unit.  My doctors were fiercely protective of me as well.  Anytime the PTs would start talking rehab floor, Dr. M and Dr. G would say "No....not yet.  She's not ready.  I don't want her down there yet. Throw out the calendar." Dr. G said.  That was, and still is, his favorite expression when it comes to me.

However, I knew rehab was coming.  And I was terrified.

Friday, April 5, 2013

A BIG experience.

I shared this story of what happened to me yesterday on Facebook and it got quite the response.  I figured I'd share it with my blog readers...

I paid for the McDonald's for the car behind me today in the drive through. The woman ended up following me all the way to the gym...she got out of her car sobbing and hugged me. The McDonald's was dinner for her children. She was bringing it home for them to eat and enjoy while she went upstairs and took her own life. Her husband left her for another woman and she is broke and hopeless. I sat with her in the gym parking lot for an hour and a half telling her about my God and how he spared me during nec fasc. I told her how bad things had gotten for me, but God walked me through it and never left my side. I prayed for her right there and offered to watch her kids so she can have a break. I gave her a spa gift card I had in my wallet, and I'm watching her babies next Thursday. True story. Pay it forward.

I told Jon what happened last night when he came over after work.  He didn't say much at first...he just watched me as I was talking and shook his head.  I saw tears in his eyes and he started asking me questions... Why did you think to do that?  I told him, I don't know... I've wanted to do that for awhile and when I looked in my rearview mirror at the car behind me, I saw the woman behind the wheel lay her head down on the steering wheel.  She kept wiping her eyes, too.  I don't know if it was just instinct or common human nature, but something tells me it was a whisper from God.  God is very much present and living on Earth.  We might not see him physically, but we see him everywhere, if we really open our eyes and look around.  Just look at the way the flowers bloom in Spring, or how the seasons change and the days get longer, so that as children, we are able to play outside longer in the summer.  Just look at the way people find it in their hearts to adopt a dog that needs a home from the pound.  Just look at the way God put you in the right place at the right time so that you'd meet the person that would one day become your husband or your wife.  Just look at the way you prayed for a girl with necrotizing fasciitis who wasn't supposed to live, and she lived and she got to keep her leg, too.  Sometimes it is so hard to see God, but He is there, and listening to a whisper might just save someone's life.  I believe that  people are put on Earth to take care of each other.  "We Belong To Each Other."-G.M*.

Jon then asked me, "Why the happy meals?"  The woman's plan, yesterday, was to get happy meals for her children so that they'd be happy and occupied when she went upstairs to swallow the pills.  She also told me that she wanted the kids to remember that their mama bought them happy meals before she died.  She wanted them to know that she loved them.  I hurt in my heart when she told me this.  I knew this mama loved her babies.  She hurt so bad that she felt there was no other way.  I told her that I understood how it feels to be at the bottomest of bottoms.  I told her my story... about the hell....and about the heaven.  I told her that when I lost my hair, I spent a week crying on the bathroom floor.  I told her that Jon held me for hours and we cried together.  I told her that I lived.  I survived.  And I'm stronger now.  I told her that I had to go to my bridal shower in a walker.  And I won't be able to wear a bikini on my honeymoon, because my scars are everywhere.  And then I told her about all of you guys.  All of you guys who prayed for me and saved my life and my leg.  I told her that maybe God put me on medical leave from work so that I could help her out.  I told her I'll watch her babies anytime she needs a break.  I gave her my gift card to the spa and I'm going to watch her babies for her so she can go get pretty.  I gave her my phone number and made her promise she'd call me if she felt like taking those pills again.

I hope that eventually I'll get her to go get professional help.  Because even though "We Belong To Each Other" (G.M.*), sometimes we need bigger help than our friends can give us.

I am so thankful that I decided to get that McDonald's diet coke yesterday.