I thought I'd give you all a little update on my friend from McDonalds. She doesn't want her name out there, so let's call her Jill.
OMG you guys, you would be so proud of her fierceness. She is a warrior. She is doing so much better. She is braver than most everyone I know, and she continues to get up every morning, take care of those kids, and LIVE.
She is moving up to Michigan soon and in with her parents. Her parents are going to love on her and love on those kids and let her BREATHE again so she can learn how to love herself again. That husband of hers (soon to be ex) took her BREATHING away. Now it's not so easy anymore. Now she has to remember to close her eyes....breathe...and then keep going. Now she has to try to get through a minute. And then another... And then another.... and once she's gotten through that a bunch of times, she realizes another day has gone by and she's gotten through it and she's still alive. She's praying now, too. I told her that it's okay if she doesn't feel like going to church right now, but the one thing she should do is keep talking to God. Just keep the communication lines open, I told her. Then you'll never really be alone.
The fact that God put me in her way to stop her from taking her own life is a gift to me. It's a day and moment that I'll never ever forget. I didn't buy her McDonalds knowing it would change both of us forever. I just wanted to see how it feels to do that for someone. It was really for myself. I've always been the type of person who likes to GIVE better than GET. I love watching someone open something that I picked out especially for him or her. My entire family is like that, in fact. My parents get SO EXCITED every Christmas. Not just because they get to see us for two weeks straight either. They love going shopping together and picking out things for the the people they love, so they can watch their laughs and squeals and happiness when they open those gifts.
Paying it forward is way of life I've chosen since I survived my illness. When I was in the hospital and cards and prayers and Amy bracelets and money that was so desperately needed were coming in, my parents sat with and told me.... "When this is all over....when you've beat this.... you have to pay it forward. God allowed you to live because He's not done with you yet. You were put here for something more. You have to pay it forward for all these prayer warriors who saved you." So, that's what I decided to do. McDonalds was the first step. My blog is another. I've decided to write this story down, not for me, but for YOU. Because without your thoughts and prayers and cards and love, I'd be dead, you guys. This blog is a gift to you. You deserve to know what happened. You deserve to know who you prayed for...what she went through...what kind of person she is....what kind of miracles God performed because of YOU. This is one way I'm paying it forward.
Tuesday, May 7, 2013
Monday, May 6, 2013
BIG. part 10.
Rehab day. As we packed up my room (full of cards, stuffed animals, balloons, signs, angels (they were everywhere...grandma brought a new one each time she came, and my mom bought 4 willow tree angels while I was fighting for my life), gifts, computers, movies, and stashes of that Ensure drink, I sat on the bed with my dad who was trying to force feed me a sandwich and cried. I was terrified to leave my home on the burn unit with my nurses who knew everything about me and my doctors who had become part of our family. They had warned us that rehab would basically be intense physical therapy--4 hours a day. I would still be assessed and given meds by the nurses, and my burn unit doctors would still come to see me every morning, but I was going to be becoming much more independent. Part of me wanted that, and part of me dreaded that. When they finally wheeled me down to rehab, the staff at the nurses station stood up and applauded for me. It still makes me tear up thinking about those amazing caretakers who genuinely were so relieved and proud that I was alive and still fighting and ready for rehab. Most of them knew me much longer than I knew them. They had cared for me night and day as a machine breathed for me and I battled between earth and Heaven. They had seen so many others go to Heaven, and they were thrilled that I had somehow won my battle. They weren't sure how, those nurses. Their doctors and their medical knowledge had taught them that a girl like me with an illness like that shouldn't have lived.
Even today when I went for a routine dr. visit, Dr. G. told me, "Well, hell, Amy. You aren't supposed to be alive. You were so close to death its no wonder you're having nightmares."
It was hard saying goodbye to my angel nurses. I think the whole family was in tears as we said our last goodbyes and headed down to the 5th floor rehab.
When I got into my room, I started to feel a little better. It was a huge room, private, with a comfy bed and big windows. My bathroom had a big huge shower with a shower chair.... wait.. I was going to be showering now? No more bed bath? That scared me. The nurse came in and was a doll. She talked about the unit and explained the way things worked. She explained that the 4 hours of therapy per day would be split up into 30 min-1.5 hour increments throughout the day at different times, with lots of breaks. Breaks during which I could sleep. I liked that. It was kinda like when I went to soccer camp at University of North Carolina and everyday was a different schedule with different drills and workshops and games at different times.
So on the rehab floor, a typical day for me would be.... wake up around 6. Choke down a little breakfast at 7. PT from 8-9, then break until 12. Occupational therapy from 12-1:30. PT again from 2-3. Then group PT from 4-4:30. Then dinner at 4:30 and then I was done for the day. My parents came in the mornings and hung out with me all day long. Sometimes they'd go off with me to therapies, other times they'd let me go myself. After dinner, I'd hang out with my parents and watch funny TV or movies until my brother came after work and Jon came after work. On the weekends, my sister came and her visits were the most fun.
Jess would bring new movies, new magazines, diet coke, candy....anything to brighten up my day. My favorite day in the hospital was the day she brought Mean Girls. She came really early in the morning and we put the movie in. Shortly after, a nurse I'd never had before brought in my meds. I had never seen her but figured maybe it was an agency nurse or something. The nurse had a fistful of pills in her hand. She mumbled what sounded like "Your nurse is running late so I have your meds for you. I have your uh...oxy..wait....pause....lost my train of thought. Um... here you go." She handed me the pills and left. Jess and I looked at each other and DIED laughing. Jess said, "Who the HELL was that?? Was that your nurse?? Was she drunk?" I was crying I was laughing so hard. "Jeez.." Jess said. "I'm not letting that drunk nurse come in here with a fistful of pills for my sister who already almost died." We laughed and laughed. (Honestly, the nurse probably wasn't drunk....she was probably just having a bad morning but it sure seemed that way). Anyways, it was one of the few moments in the hospital that I was able to really let go and laugh. After we watched Mean Girls, Jessica and my mom washed my hair in the bed and painted my fingernails and toenails. It was a great day.
Rehab was extremely intense and painful. I was off the IV by that point and just getting oral pain medications. Although the medication was less strong, the pain certainly wasn't. I'd get about a good 2 hours of relief after getting my meds and then for the other two hours, I'd be crying or praying or breathing like I was in labor. But I'm a damn fighter. I went to every PT session and worked my butt off. I wanted to walk. Heck, I wanted to be able to stand up without help. When asked what my goals were for PT, my number one goal was "To walk down the aisle at my wedding in May."
In 3 weeks, I get to do just that. :)
Even today when I went for a routine dr. visit, Dr. G. told me, "Well, hell, Amy. You aren't supposed to be alive. You were so close to death its no wonder you're having nightmares."
It was hard saying goodbye to my angel nurses. I think the whole family was in tears as we said our last goodbyes and headed down to the 5th floor rehab.
When I got into my room, I started to feel a little better. It was a huge room, private, with a comfy bed and big windows. My bathroom had a big huge shower with a shower chair.... wait.. I was going to be showering now? No more bed bath? That scared me. The nurse came in and was a doll. She talked about the unit and explained the way things worked. She explained that the 4 hours of therapy per day would be split up into 30 min-1.5 hour increments throughout the day at different times, with lots of breaks. Breaks during which I could sleep. I liked that. It was kinda like when I went to soccer camp at University of North Carolina and everyday was a different schedule with different drills and workshops and games at different times.
So on the rehab floor, a typical day for me would be.... wake up around 6. Choke down a little breakfast at 7. PT from 8-9, then break until 12. Occupational therapy from 12-1:30. PT again from 2-3. Then group PT from 4-4:30. Then dinner at 4:30 and then I was done for the day. My parents came in the mornings and hung out with me all day long. Sometimes they'd go off with me to therapies, other times they'd let me go myself. After dinner, I'd hang out with my parents and watch funny TV or movies until my brother came after work and Jon came after work. On the weekends, my sister came and her visits were the most fun.
Jess would bring new movies, new magazines, diet coke, candy....anything to brighten up my day. My favorite day in the hospital was the day she brought Mean Girls. She came really early in the morning and we put the movie in. Shortly after, a nurse I'd never had before brought in my meds. I had never seen her but figured maybe it was an agency nurse or something. The nurse had a fistful of pills in her hand. She mumbled what sounded like "Your nurse is running late so I have your meds for you. I have your uh...oxy..wait....pause....lost my train of thought. Um... here you go." She handed me the pills and left. Jess and I looked at each other and DIED laughing. Jess said, "Who the HELL was that?? Was that your nurse?? Was she drunk?" I was crying I was laughing so hard. "Jeez.." Jess said. "I'm not letting that drunk nurse come in here with a fistful of pills for my sister who already almost died." We laughed and laughed. (Honestly, the nurse probably wasn't drunk....she was probably just having a bad morning but it sure seemed that way). Anyways, it was one of the few moments in the hospital that I was able to really let go and laugh. After we watched Mean Girls, Jessica and my mom washed my hair in the bed and painted my fingernails and toenails. It was a great day.
Rehab was extremely intense and painful. I was off the IV by that point and just getting oral pain medications. Although the medication was less strong, the pain certainly wasn't. I'd get about a good 2 hours of relief after getting my meds and then for the other two hours, I'd be crying or praying or breathing like I was in labor. But I'm a damn fighter. I went to every PT session and worked my butt off. I wanted to walk. Heck, I wanted to be able to stand up without help. When asked what my goals were for PT, my number one goal was "To walk down the aisle at my wedding in May."
In 3 weeks, I get to do just that. :)
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 surgery...it 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 flat....it 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 warmer...you 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.
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 surgery...it 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 flat....it 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 warmer...you 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 hurts...my 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.
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.
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.
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.
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 breathe...it 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 me....me 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 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 breathe...it 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 me....me 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.....
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