I just want to send a BIG thank you to all of you who have walked alongside of me in the crazy journey. God has answered all of our prayers, and I'm doing great.
My pain is pretty much gone. There are still times I feel sore or my scars bother me, but nothing compared to what I've been through. I'm running 6-7 days a week again. I've had to teach myself how to run differently and use my good leg more to keep the pain in my right leg at a minimum, but I'm fighting every single day for a better run.
Hoping to get back to work very soon.
Thank you again for your continued prayers and support. Although my BIG will be a part of my life forever, I'm getting better every single day, and ready to get on with my life! Ready to be delivering babies and running marathons again. (I already have a marathon destination in mind) and my ultimate goal is to beat my 3:38 personal best and go for a 3:15. I've already qualified for Boston once, and I'm determined to do it again with my new leg.
I'll continue to keep everyone updated on how I'm doing, but hopefully this blog will be less and less about my experience with nec fasc and more and more about my life as a marathon runner, newlywed, labor & delivery nurse.
Saturday, May 3, 2014
Monday, April 14, 2014
BIG #25: Recovery
I was worried about going home.
Most people cannot wait to get out of the hospital when they have to go there. But after you nearly die everyday for 3 weeks and then again a year later, you start to fear leaving the place that saved you on two separate admissions.
I stayed in the hospital for 3 more days after the second surgery. An additional drain had been placed in my abdomen, so I now had four drains removing the blood and fluid from my abdomen and leg. The pain was nearly unbearable. The pain medication helped a little, but I was on an IV, and I knew when I went home, that would be stopped and I couldn't imagine how bad the pain would be without the strong medications. During those 4 days in the hospital, I slept a total of about 4 hours. I was so much pain I couldn't sleep. I'd dose off for a few minutes then be jolted awake by stabs of pain in my stomach. The majority of the pain was on the right side of my abdomen where the hematoma was. That poor area had been operated on twice in one day, plus 5 times previous to that. The post op pain for this most recent surgery was the worst yet, and I didn't know how it would be possible to manage it.
Besides the pain, I felt weak. Unstable. Just felt like something was seriously wrong and it didn't feel right to not be monitored 24/7. My heart rate was still hanging around 130-140. My doctor and nurses attributed it to the pain, but something just didn't feel right. I had received quite a few units of blood so my labs started to improve, yet I worried about my heart rate and overall stability.
I was excited to be in my own bed and see Mady and eat regular food instead of hospital food, but I was scared. As a nurse, I know the dangers of 3 large incisions, back-to-back surgeries in the same incision, too much blood loss, possible infection, and potentially, another hematoma. I had to trust my doctors and God.
After I got home, there is really only one word that could sum it up: Pain.
It was absolutely horrible. Worse than the skin grafts, because one, with the grafts, I was in the hospital and on IV medications for 2 weeks afterwards, and two, the skin graft removal and reconstruction of my abdomen paired with a hematoma had crushed that part of my body.
It also wasn't fun laying in one position without being able to really move. I had a brace on my leg so I couldn't bend or move it (they didn't want the new incision to be pulled at all). Besides the pain, that was the hardest part. Since my discharge from the hospital after my BIG hospitalization and those first 6 surgeries, I have been devoted to my PT and working out daily to get my leg to heal. That hour or two a day de-stresses me and makes me feel great because I know with every workout, I'm strengthening that leg. TV isn't fun anymore when you're watching it 24/7 for 5 weeks. Despite the pain, I wanted to jump off that couch and do something. Just laying there is depressing. With the 4 drains, I felt self-conscious. It isn't pleasant looking at that, trust me.
A week after I was discharged from the hospital, I started noticing that there was too much fluid in the drains and my abdomen started swelling. I had a sudden drastic increase in the pain, and it was horrible. I cried to my mom over the phone, asking her to please pray that the pain would go away. I was scared that something was wrong, so Jon brought me to the ER to get checked out. They did a CT scan of my abdomen and noted that there was some fluid and a ton of air on the right side where the hematoma was. The fluid and air was pushing against my incision from the inside, causing severe pain. There was nothing they could really do for it...I just had to wait it out. Another trip to Loyola a few weeks later resulted the removal and re-insertion of the drains when the doctor noted that there was too much fluid and fluid build-up under my abdomen. I was running a fever and was put on antibiotics, and the quick diagnosis prevented any additional surgery to remove fluid. Of course recovery couldn't be simple.
One funny story from the night Jon took me to the ER. The resident who reviewed my CT scan in ER saw the air in my abdomen under the incision and came in the room and told us "We're gonna have the surgical team look at the CT because one of the signs of necrotizing fasciitis is air buildup inside the body. I'm concerned you might have nec fasc again." ARE YOU FREAKING KIDDING ME?!!! Jon was like "WHAT??? What the heck are you talking about??! " I knew it wasn't nec fasc and the surgical team confirmed it, so I can laugh about it now. He was a first year resident in his ER rotation and just hadn't encountered NF. Of course he hadn't, there's only 500 cases a year in the US. It's funny when I see a new doctor or nurse who hasn't taken care of a patient with a history of NF and all the surgeries, wounds, skin grafts, coma, etc. They are always fascinated, ask a million questions, and want to examine all the wounds. I can't blame them, I'd probably be curious too. When I told Dr. Mosier and Dr. G about it, they just laughed and shook their heads.
After those shenanigans were over, all that was left was recovery. I layed on the couch and tried to ignore the pain. Eventually, the drains were taken out, one by one. The last abdominal drain stayed in for several more weeks but finally they removed that, and I was somewhat free. Not really, I still had to lay there and not move, but at least I wasn't dragging drains around. Laying there like that was extremely depressing. I felt somewhat worthless- I couldn't work, I couldn't take care of the house, I couldn't make dinner. As others went on with their lives, I started to feel lonely. Jon was amazing, as usual, but he was gone at work for 12 hours a day. There were many, MANY, times that I called my mom crying. WHY am I still going through this?? Why did this happen? It's not fair! I'm so sick of being sick. Why am I still consumed with this nec fasc while everyone else is living their lives, working, having kids, etc. "I know, Ames," she would say. "I know it feels unfair. God is gonna get you through this. You have to trust that God has great plans for you.. We don't know why, but we have to trust."
I knew I had to walk with God instead of walking away. And when you feel like that, trust me, sometimes you feel like walking away. I knew I had to trust in Him and go to Him for strength, instead of trying to be strong on my own.
5 weeks after surgeries 8 & 9 I was allowed to start PT again. I was thrilled... Finally I could MOVE!!
I'm now around 12 weeks out. I'm working my butt off in the gym, trying to strengthen a leg that has no quad muscle. I'm teaching myself how to run differently, using different muscles instead of my right quad. As a result, my knee and hip are constantly sore and my calfs cramp in the beginning of every run.
You might think, okay, if you can run, you're totally healed, right? Ehh...no. Not yet. Nec fasc is an illness that brings lots of lingering health effects. I still don't sleep well. I still have nightmares about surgery. I still deal with weakness all day long, and have to suck it up to go to the gym for that hour or two. When I'm done working out or going to PT, my body is just done. I ache so bad, everywhere. My leg, my hip, my knee, my back. Since alot of my abdominal muscle was removed, I just don't have any strength in my core. Working out and PT is helping that, and slowly, I'm getting stronger.
My goal right now is to get back to work (I'm a labor & delivery nurse) sometime this summer. I'm doing everything I can to build up my endurance, deal with the pain, and fight the weakness. Right now, a 12 hour shift would be impossible. Even a 4 hour shift would be extremely difficult and probably very painful.
I know I can do it. I'm praying about it daily and doing my part- working hard and fighting. I know when I run my first post-nec fasc marathon and help deliver the first baby, all of this hard work will pay off in pure exhilaration.
And when in doubt, I have to remember that I'm here. I'm alive. I beat the odds; 5% survival rate.
I have a BIG but it's now what makes me, me. and I AM BLESSED.
Tuesday, April 1, 2014
What We're Up To...
Working on my recovery from surgeries 8 & 9 post and my goal is to get that up this week, and I've also started compiling pictures for my Caleb post.
Yes....Our lives changed DRASTICALLY last week. My brother and sister-in-law gave birth to their first baby, who is the first baby born in the Bahr family, immediate and extended. First grandchild, first great-grandchild, first great-nephew, first second-cousin, first nephew!
He is our world!!! Seriously, I've only been apart from him one day since he was born a week ago, and I missed him terribly. Jon and I went from talking about a baby to a very intense baby fever, very quickly. :)
Sorry I'm a little slow with posting lately.....We've been a little busy around here....
Yes....Our lives changed DRASTICALLY last week. My brother and sister-in-law gave birth to their first baby, who is the first baby born in the Bahr family, immediate and extended. First grandchild, first great-grandchild, first great-nephew, first second-cousin, first nephew!
He is our world!!! Seriously, I've only been apart from him one day since he was born a week ago, and I missed him terribly. Jon and I went from talking about a baby to a very intense baby fever, very quickly. :)
Sorry I'm a little slow with posting lately.....We've been a little busy around here....
- Obsessively taking pictures of the love of our life, Caleb Robert Bahr.
- Planning our anniversarymoon.
- Enjoying the first day of Spring, which for me means outdoor running, and for Jon means obsessively golfing.
- Going on our first date night post-surgeries 8 & 9. Mind you, that date night included sweatpants, ball caps, and Hooters for March Madness. But nonetheless, we drove to an actual restaurant, and ate INSIDE THE BUILDING. You'll see when you read the recovery post, these last 2 surgeries were hell and recovery was even worse. As a result, there's been a lot of Subway and bowls of cereal being eaten in the Nilles household since January.
- Speaking of which, I went to the grocery store last week for the first time since surgery. Yeah we both lost about 10 pounds and were starving. I kid. but really, that's how long it took my body to be able to get through such a task. It was rough though... I was incredibly sore afterwards and literally came home, laid on the couch in a ball and cried to Jon. Eventually he was able to massage me out of my ball and I felt a little better with some pain medicine and the massage. Good husband.
- And our best and biggest news besides baby Caleb... Jon got a huge promotion to one of the highest positions in the company last week. I am such a PROUD WIFE!! He has just killed it over there, moving up in the company at lightning speed, despite me getting sick and him having to miss several chunks of work because of my hospitalizations. I am endlessly amazed by him.
- And finally, we're planning a few trips in the next few months, so we're gonna be jet-setters this Spring. Besides our one-year anniversarymoon, we're going to Dallas in May for my cousin's wedding, and then entire Bahr family is going on a cruise to Bermuda in June. Oh my gosh, stick me in a suitcase and sent me there now. I cannot wait! It will be Jon's first cruise, and I can't wait for him to see what a Celebrity cruise is like. Celebrity is the only cruise line my family uses (Uncle Rick and Nick who go on 4-6 cruises a year and know everything about them have dubbed Celebrity the very best...and they are). It will be fun to be in such a beautiful place with the hubs, and also, it will be great to be with my Bahr family, who I adore. My cousin Bryan will be there who is one of my best friends and we always have a blast together on family trips. Every year when we were growing up, our parents took our families on vacation together and those trips are my favorite memories of childhood. Needless to say, we are excited to be world travelers over the next few months!
Hope everyone is having a great week, and I'll put out an email and Facebook share when I've gotten the next BIG up and the Caleb post.
Tuesday, March 18, 2014
Baby Frankie's BIG part 2.
If you need to refresh yourself on where I left off with Frankie's story, go here.
As the year went on, Frankie slowly began to heal. But his journey was far from over. Necrotizing Fasciitis is much worse in a baby, toddler, or child than an adult, because kids that small are constantly growing, which means their wounds and scars stretch, and the grafts start breaking down. As a result, Frankie was taken back into surgery several more times in this last year to fix areas of breakdown. Even worse, as Frankie continues to grow, he will need to be re-grafted many more times. You all remember me telling you how bad the skin grafts are. It is the worst, most unimaginable pain you can think of. They remove layers of your skin from one area of your body and sew it onto another. Your skin is where all of your nerve endings are, and so it literally feels how it sounds. The most intense burning, throbbing, stinging sensation you could ever imagine. This poor child is gonna have to go through this again and again as he grows. How this amazing toddler dealt with this nightmare continues to baffle me. He had to wear a pressure suit practically 24 hours a day to hold pressure on the wounds and grafts, prevent infection, and promote healing. These pressure suits are in no way comfortable. Can you imagine being wrapped up like a tight mummy 22 hours a day? With constant pressure being put on enormous, painful wounds on your body?
He had to be massaged with cream 4 times a day for 25 minutes at a time, and had to take a ton of medications. He was given steroid injections to help flatten the scars and help mobility. His mother Lucy was thrilled that her brave little man had somehow beat this monster disease, despite the odds that were against him. However, surviving it doesn't mean it's over....it's long from over. Everyday she has to wake up and get out of bed and watch her child suffer.
Despite all that, she kept getting up. She put her effort into not only helping Frankie, but raising awareness of nec fasc so that others would be helped. She continued to count her blessings, not her hardships. She continued to walk WITH God and not AWAY from him. She started to think things were getting better.
Then everything changed.
About a month ago, Frankie developed redness on his back (where he had originally had nec fasc). He quickly developed a fever of over 104 and immediately, they took him into the hospital. The doctors did blood tests, and his CRP (protein in the body that indicates infection) was extremely high. Even worse, Strep A was present again. (The bacteria that causes nec fasc).
The doctors told Lucy and her husband that Frankie had necrotizing fasciitis AGAIN. A SECOND TIME. Most doctors will tell you that it's just as likely for you to develop nec fasc a second time as it is for any other person to develop it for the first time (roughly 1 in a million chance).
When I saw the message from Lucy that Frankie had developed nec fasc a second time and was being taken into emergency surgery to remove the skin graft on his back and debride the necrotized tissue, I literally broke down sobbing and then got sick. Everyone in our support group started praying furiously, and that's when I put up the Facebook message for everyone to pray for Frankie. Here's a picture of Frank the Tank right before surgery. Thumbs up. Brave little boy.
Frankie made it through the surgery, though not without a ton of pain. Lucy had to fight with the doctors to give him adequate pain medications, because he was screaming and they were only giving him Ibuprofin and tylenol. Can you freaking believe that?? I understand that toddlers can't get the amount of narcotics as an adult, but BABIES FEEL PAIN TOO. Just because they can't tell you in words where and how bad their pain is doesn't mean they don't feel it. (And before you ask, yes, babies and children can have morphine. There is dosing for even the tiniest of babies.)
What the heck kind of hospital would ever do that to a child, you ask? Well, sadly, in the UK where Frankie lives, healthcare is a mess. The hospitals are nowhere near the standards are here in the US.
The thing I'm about to tell you next proves my point.
After Frankie was opened back up, the surgeons couldn't find any necrotized (dead) tissue in his back. They removed some tissue anyways for testing. They figured they had just caught the infection before it started necrotizing or it was in a different area of his body.
In the meantime, Lucy started doing some research and found that Strep A also not only causes strep throat, but scarlett fever. All of a sudden, she put the pieces together in her head....fever, lethargy, redness and rash over parts of his body. OMG, she thought. It's NOT nec fasc. It's scarlett fever.
She immediately told the doctor of her concerns, and they looked in Frankie's throat. Sure enough, there was a good amount of suspect-looking mucus. They took a sample, and yep, it came back Strep A. SCARLETT FEVER.
Lucy and her husband were extremely upset. They're baby had just been put through another useless surgery, unnecessary pain, and would have to have ANOTHER skin graft. Most people would scream and be furious and hateful, and possibly get violent. I have to admit, if this happened to me or our future children, my husband would likely cause bodily injury to whoever was responsible. (kidding.....kind of.)
But as upset as they were, Lucy STILL THANKED GOD. Even in the worst of it, she praised Him. She thanked Him that it wasn't nec fasc and that he had survived. She thanked Him for giving her a son who is as strong and brave as Frankie is. She knew she couldn't let anger hold her down and take up her energy... Frankie needed her. And as hard as that sounds (and is), God is gonna bless her for that. When we trust Him in our trials, HE BLESSES THAT.
People have told me that they are surprised by my continued faith in God and willingness to praise Him, even though I've been through hell and it seems like one thing after another. Let me just tell you, it hasn't always been that easy. There have been times when I've just sobbed and asked God, "why me? I cannot handle one more thing." There have been times when I've been mad. REALLY mad.
And then, I realize that I'm still here. God blessed me in that He let me live. He let me keep my leg. Most people are killed by this disease and/or lose their arms, legs, and other organs. Yeah, I have a ton of scars and most of the muscle from my right leg and abdomen is gone, but I'm one of the blessed ones who survived it, against all odds, and got to walk again, and marry the love of my life. When I think about what it would have been like for Jon and my family to lose me, it quickly slaps me back into feeling blessed, and not resentful.
The Bible tells us to "Rejoice evermore. Pray without ceasing. In everything give thanks for this is the will of God in Christ Jesus." 1 Thessalonians 5:16-18
This doesn't necessarily mean that we are to thank God for horrible things and tragedies that come our way. It means that we are still find joy in our lives no matter what is happening because we have God and in Him we can overcome no matter what the Devil throws at us. God doesn't want us to thank Him for the bad things, because He didn't send them...Satan did. He isn't the author of evil. But if we become bitter and angry and that becomes the focus of our life, we aren't doing what we are supposed to be doing...which is loving each other and loving Jesus.
As far as Frankie goes, he too continues to be a chosen miracle of God. He survived ANOTHER surgery a few days ago to graft more skin onto the re-opened wound on his back. (a 10 inch by 7 inch wound, mind you.) He did amazingly well, and our prayers were answered. Not only did he live, but his pain has been managed relatively well since then. God can give way better pain medications than the pharmacy can. Somehow, Frankie has seemed to be almost free of pain since the skin graft. Here, take a look for yourself. Here he is playing in the hospital playroom, just a day or two after the surgery.
As the year went on, Frankie slowly began to heal. But his journey was far from over. Necrotizing Fasciitis is much worse in a baby, toddler, or child than an adult, because kids that small are constantly growing, which means their wounds and scars stretch, and the grafts start breaking down. As a result, Frankie was taken back into surgery several more times in this last year to fix areas of breakdown. Even worse, as Frankie continues to grow, he will need to be re-grafted many more times. You all remember me telling you how bad the skin grafts are. It is the worst, most unimaginable pain you can think of. They remove layers of your skin from one area of your body and sew it onto another. Your skin is where all of your nerve endings are, and so it literally feels how it sounds. The most intense burning, throbbing, stinging sensation you could ever imagine. This poor child is gonna have to go through this again and again as he grows. How this amazing toddler dealt with this nightmare continues to baffle me. He had to wear a pressure suit practically 24 hours a day to hold pressure on the wounds and grafts, prevent infection, and promote healing. These pressure suits are in no way comfortable. Can you imagine being wrapped up like a tight mummy 22 hours a day? With constant pressure being put on enormous, painful wounds on your body?
Despite all that, she kept getting up. She put her effort into not only helping Frankie, but raising awareness of nec fasc so that others would be helped. She continued to count her blessings, not her hardships. She continued to walk WITH God and not AWAY from him. She started to think things were getting better.
Then everything changed.
About a month ago, Frankie developed redness on his back (where he had originally had nec fasc). He quickly developed a fever of over 104 and immediately, they took him into the hospital. The doctors did blood tests, and his CRP (protein in the body that indicates infection) was extremely high. Even worse, Strep A was present again. (The bacteria that causes nec fasc).
The doctors told Lucy and her husband that Frankie had necrotizing fasciitis AGAIN. A SECOND TIME. Most doctors will tell you that it's just as likely for you to develop nec fasc a second time as it is for any other person to develop it for the first time (roughly 1 in a million chance).
When I saw the message from Lucy that Frankie had developed nec fasc a second time and was being taken into emergency surgery to remove the skin graft on his back and debride the necrotized tissue, I literally broke down sobbing and then got sick. Everyone in our support group started praying furiously, and that's when I put up the Facebook message for everyone to pray for Frankie. Here's a picture of Frank the Tank right before surgery. Thumbs up. Brave little boy.
Frankie made it through the surgery, though not without a ton of pain. Lucy had to fight with the doctors to give him adequate pain medications, because he was screaming and they were only giving him Ibuprofin and tylenol. Can you freaking believe that?? I understand that toddlers can't get the amount of narcotics as an adult, but BABIES FEEL PAIN TOO. Just because they can't tell you in words where and how bad their pain is doesn't mean they don't feel it. (And before you ask, yes, babies and children can have morphine. There is dosing for even the tiniest of babies.)
What the heck kind of hospital would ever do that to a child, you ask? Well, sadly, in the UK where Frankie lives, healthcare is a mess. The hospitals are nowhere near the standards are here in the US.
The thing I'm about to tell you next proves my point.
After Frankie was opened back up, the surgeons couldn't find any necrotized (dead) tissue in his back. They removed some tissue anyways for testing. They figured they had just caught the infection before it started necrotizing or it was in a different area of his body.
In the meantime, Lucy started doing some research and found that Strep A also not only causes strep throat, but scarlett fever. All of a sudden, she put the pieces together in her head....fever, lethargy, redness and rash over parts of his body. OMG, she thought. It's NOT nec fasc. It's scarlett fever.
She immediately told the doctor of her concerns, and they looked in Frankie's throat. Sure enough, there was a good amount of suspect-looking mucus. They took a sample, and yep, it came back Strep A. SCARLETT FEVER.
Lucy and her husband were extremely upset. They're baby had just been put through another useless surgery, unnecessary pain, and would have to have ANOTHER skin graft. Most people would scream and be furious and hateful, and possibly get violent. I have to admit, if this happened to me or our future children, my husband would likely cause bodily injury to whoever was responsible. (kidding.....kind of.)
But as upset as they were, Lucy STILL THANKED GOD. Even in the worst of it, she praised Him. She thanked Him that it wasn't nec fasc and that he had survived. She thanked Him for giving her a son who is as strong and brave as Frankie is. She knew she couldn't let anger hold her down and take up her energy... Frankie needed her. And as hard as that sounds (and is), God is gonna bless her for that. When we trust Him in our trials, HE BLESSES THAT.
People have told me that they are surprised by my continued faith in God and willingness to praise Him, even though I've been through hell and it seems like one thing after another. Let me just tell you, it hasn't always been that easy. There have been times when I've just sobbed and asked God, "why me? I cannot handle one more thing." There have been times when I've been mad. REALLY mad.
And then, I realize that I'm still here. God blessed me in that He let me live. He let me keep my leg. Most people are killed by this disease and/or lose their arms, legs, and other organs. Yeah, I have a ton of scars and most of the muscle from my right leg and abdomen is gone, but I'm one of the blessed ones who survived it, against all odds, and got to walk again, and marry the love of my life. When I think about what it would have been like for Jon and my family to lose me, it quickly slaps me back into feeling blessed, and not resentful.
The Bible tells us to "Rejoice evermore. Pray without ceasing. In everything give thanks for this is the will of God in Christ Jesus." 1 Thessalonians 5:16-18
This doesn't necessarily mean that we are to thank God for horrible things and tragedies that come our way. It means that we are still find joy in our lives no matter what is happening because we have God and in Him we can overcome no matter what the Devil throws at us. God doesn't want us to thank Him for the bad things, because He didn't send them...Satan did. He isn't the author of evil. But if we become bitter and angry and that becomes the focus of our life, we aren't doing what we are supposed to be doing...which is loving each other and loving Jesus.
As far as Frankie goes, he too continues to be a chosen miracle of God. He survived ANOTHER surgery a few days ago to graft more skin onto the re-opened wound on his back. (a 10 inch by 7 inch wound, mind you.) He did amazingly well, and our prayers were answered. Not only did he live, but his pain has been managed relatively well since then. God can give way better pain medications than the pharmacy can. Somehow, Frankie has seemed to be almost free of pain since the skin graft. Here, take a look for yourself. Here he is playing in the hospital playroom, just a day or two after the surgery.
Even when he's tired, he's still strong enough and doing well enough to want to play.
Frankie is still in the hospital as I write this. They are treating his scarlett fever and managing his new wounds from the surgery. Please, continue to pray for this little guy. He needs us. Pray that he doesn't feel pain. Pray that he doesn't remember this someday. Pray for his parents, as they are stressed and tired, but still fighting every minute for their son.
Sunday, March 16, 2014
BIG #24- Emergency Surgery #9
Thank you for being so patient for this chapter of my BIG. And thank you for reading the post I wrote this past week and posted yesterday about Frankie's BIG. If you haven't had a chance to read it, check it out. He is such a little fighter and remarkable toddler. I will get part 2 of HIS Story up this week. For now, here is the next chapter of mine.
If you need to refresh your memory about where we left off in my story, go here.
As the night went on after surgery #8, I continued to deteriorate. I was hooked up to the telemetry, and it was constantly beeping. HR way too high. Blood pressure way too low. Fever started creeping up. Worse of all, every time I picked up my blanket, I was sitting in a pool of new blood. I knew I was bleeding out as the IV team came to start 3 more IVs and had me sign the consent for blood products. Labs were drawn every 30 minutes and every resident on the surgical floor was in and out of my room.
My abdomen started to feel hard and develop what looked like a baseball sized lump underneath the skin. The pain throbbed. It felt like my organs were about to rip right through my skin. I didn't cry or scream.... no. I was freaking terrified. I clenched the bed and shivered. I shivered for hour after hour, praying silently that somehow this was all a nightmare that I'd wake up from. Sleep was completely out of the question.
I knew something was terribly wrong. Nurses were in and out of my room checking my vitals every few minutes and every time the doctors would look at my abdominal wound, they seemed more panicked. Finally enough was enough and they called my surgeon to come in from home in the middle of the night. Seeing him show up at my bedside at 3 a.m. was not a sight I wanted to see. He is one of the most prestigious surgeons in Chicago, the very best for nec fasc and burn victims. He doesn't get called in the middle of the night unless there's a real emergency.
The residents had warned me that there was a possibility I was bleeding internally and the blood was starting to clot in an internal "bruise" called a hematoma. I could see a baseball sized lump forming on my stomach as I lay there, and the pain was unbearable. I called my parents, and my dad started frantically googling "hematoma after surgery."
What worried me the most was my vitals and my labs. I knew I already had an extremely low hemoglobin and hematocrit as well as platelets from the shock and organ failure I'd gone through during my first hospitalization. I started shaking when I heard the nurse call the blood bank and demand units of blood and platelets be sent up immediately. "No, NOW. We need it like YESTERDAY," she said. Luckily I had been typed, screened, and cross-matched many times before. My name is probably well known in that blood bank after this entire fiasco over the last year.
When my surgeon ran in at 3 a.m., he took one look at me and called it. We're taking you in NOW. "Call the OR, emergent case," he ordered the nurse. "Her platelets are 55," the nurse said.
I grabbed my phone and called my parents and Jon. "I'm going into emergency surgery now. No, Jon, you can't talk to the doctor, we're going now.
It was then that I heard the 3 words that I'd heard so many times as a nurse, but never, ever, ever expected to hear as a patient. "CALL A CODE."
A code can mean a few things. Every hospital has different names for these codes (or emergencies). In many hospitals, code red or code blue is when the patient is in cardiac arrest... the code they called for me (not red, but I can't remember the number/letter they used) was because of my rapidly declining status and need for additional and immediate help to get me stabilized and into the OR FAST.
At that point, I was the most terrified I have ever been throughout this entire journey. I knew I wasn't stable. I knew I was going to be put to sleep AGAIN, my wounds re-opened AGAIN, and the doctor was gonna have to start initiating measures to stop me from hemorrhaging to death. I had already been on death's door once. I honestly felt like I was at that door again, and this time, I might not be able to survive it.
I was still shivering uncontrollably. I didn't know what to do but pray. I put my hand on my abdomen and prayed that God would stop the bleeding, as He is the Great Healer. I had nothing left but faith. I couldn't trust my body. I couldn't save myself by mentally being a fighter. It was no longer in my control and I prayed that God would put his hands on the hands of my surgeon and heal me.
Then I prayed that if He was ready for me and I didn't make it, that he would take care of Jon. This is the first time I've actually told anyone about these moments. It was so painful but all I could think of what this would do to my husband and family. I prayed that if I didn't make it, Jon would find comfort from God. I prayed that He would look Up and not Away.
As we headed into the OR and the anesthesia started to kick in, I asked God for forgiveness and His grace and begged that He let me live and I promised that I'd continue to use this experience to witness to others.
***
When I woke up, I was in recovery. I felt the burn in the back of my throat from the breathing tube and was immediately hit with the most intense pain I'd felt since the skin graft surgery. I gripped the side of the bed and tried to breathe through it. I couldn't stop shivering, as that is my body's response to pain, as we have found out.
I couldn't think of anything else besides the pain. The nurse that took care of me was concerned with my wounds, labs, and vital signs and wouldn't take me back to my room where my family was. I kept telling her I was okay, but she kept me there for an additional 4 hours.
The doctor explained that I had a baseball sized hematoma in my abdomen where they'd removed the skin graft. They had to operate so deep and the graft was attached to several organs, so it was difficult to remove, and therefore, a lot of blood vessels and nerves had been severed, which explains the the hemorrhage and hematoma. Because of the re-opening, muscle maneuvering, and nerve damage, pain was inevitable. In order to drain the fluids and blood inside the body, four drains were placed. Three were in my abdomen and there was also a drain on my leg.
Finally I was taken back to my room, to my family. The pain was horrible, but I felt better being back in my room with my family at my bedside.
I was kept in the hospital for 3 more days, to monitor the wounds, hematoma, drains, vital signs, and my labs. I was running a fever of 100-101 the whole time. They started several IV antibiotics in case an infection was brewing. My heart rate was also extremely high. My body was just having a hard time keeping up with all the trauma.
When it was time to go home, I was worried. I still had a fever, my heart rate was still high, and the pain was unbearable, particularly where the hematoma had been removed. I was told I could not be standing for more than a minute or two, no showering (bed baths only) no walking without a leg stabilizer and abdominal binder and my walker. "So what am I ALLOWED to do?" I asked Dr. C. Not much, he said. We don't want you moving too much because we don't want to disturb the scars and cause any stretching or tearing of the wound and stitches. "How long?" I asked. "Probably at least 6 weeks," he said. No moving, running, shopping, gym, driving, etc. etc. for 6 WEEKS?? Ugh.
As it turns out, the restrictions were the easy part of my recovery. Little did I know that I was about to face my most painful recovery yet. Will talk about that more in BIG #25 Final Recovery.
Saturday, March 15, 2014
Baby Frankie's BIG. Part 1.
The past 2 months have been pretty rough in this nec fasc journey. As you all know, I underwent my 8th and 9th surgery at the end of January to remove the skin grafts and reconstruct all of the scarring. Basically making my shark attack looking body look a teeny bit better. I still have scars like you wouldn't believe, but I AM BLESSED that I'm alive. And I'm blessed because not everyone with nec fasc gets to have reconstructive surgery. Many of the victims of this nightmare that actually survive it have to live with shark attack body forever. Or amputated limbs.
This last surgery had complications and required additional surgery and a hellish recovery. I've been in extreme, debilitating pain. I wasn't able to walk, move around, go the gym, go to the store, ANYTHING for a month. It was horrible, especially for someone whose heart is 90% running, 10% everything else. (kidding) But really, I'm not myself when I can't run and to not even be able to walk has been depressing beyond belief. I've been down. Lonely. Feeling a little sorry for myself.
Maybe a little too sorry for myself, because God stepped in and refocused me. Just when I thought nothing could possibly be worse than what I went through, I learned about 2 year old Frankie.
A nurse who I met through the National Necrotizing Fasciitis Foundation (there aren't many of us, so we all get to know each other) invited me into a closed Facebook group for survivors of necrotizing fasciitis. And boy, I've gone through a gamut of emotions since joining this group. It's basically a forum where survivors of nec fasc and their families can share their journeys, vent their frustrations, fears, and heartbreaks, and celebrate their successes. As I started to read through the journeys of others who have walked this strange and horrific path, I cried my heart out. Finally I had found a group of people who understood this nightmare. There aren't many of us. Less than 300 and that includes family members. Still, hearing that others shared the sleepless nights, the horrific pain, the sadness of losing skin, muscle, limbs....losing what our bodies once were...the PTSD, the nightmares, the losses....it gave me hope. It made me realize that I can too be brave enough to fight this fight and come out on the other side.
I came across the journey of Frankie. Frankie was only a little over one year old when he was diagnosed with nec fasc. Even thinking about it breaks me. How can a baby be subjected to this nightmare? It isn't fair. This isn't a disease that you have and then one day move on from. If you survive at all, your health is changed forever. You likely are missing limbs, organs, large areas of limbs. The surgeries beyond painful as the surgeons' only way to save the patient is to remove the tissue affected by the infection, which is generally skin, fascia, and muscle, and when it goes too far, the entire leg or arm. How in the hell a baby could get this made me side-eye God at first, to be honest. I don't have the answers. I know that God doesn't GIVE us these nightmares. He loves us. It hurts Him to SEE US HURT. They happen as a result of us being humans and this being Earth. We aren't in Heaven. These things won't happen there, and that is a beautiful and hopeful thing. All we can do is trust that the things that happen on Earth are part of HIS GREATER PLAN. That is really freaking hard to come to terms with. My BIG happened for a reason. It's part of a BIGGER plan that I rarely understand, although as I've fought my way through recovery, I sometimes get glimpses of understanding. I know that we are here on Earth to practice loving each other so we know how to be more like God. And how to love in Heaven. And we're here to take care of each other. Walk beside each other. And maybe I wouldn't have learned those lessons without going through this. I can't speak for Frankie or any other baby who undeservingly goes through something like this. All I can do is pray and trust and do what I can to love Frankie and his brave mama and his family. Walk beside them. Like so many have walked beside me.
Frankie lives in the UK. He was a normal, beautiful, blonde-haired, blue-eyed, healthy toddler when he developed nec fasc. Last April, Frankie developed a high fever one day and wasn't acting like himself. As his fever rose quickly to over 102 degrees, his mom Lucy became worried and took him into the hospital. As she brought him in, she noticed a small bump on his back that had started to become warm and red. When Frankie was admitted, he was already in organ failure and shock. Blood tests confirmed that Strep A (the bacteria that if aggravated can turn into nec fasc), and within hours, it spread all over his back, sides, part of his chest, and legs. The doctors believed that he developed the infection from a little cut on his forehead he'd gotten from bumping his head. They believe the bacteria somehow got into the cut and lay dormant for a few days and then started to spread and attack. Frankie's mom was told there was very little hope and that all affected skin, tissue, and muscle would have to be removed, and fast. If he survived at all, this baby would have large chunks of his body missing.
After a 9 hour surgery, Frankie was still alive, although a 7 inch by 9 inch section of his back was gone, parts of his shoulder, and sides. He was in a coma, his vital signs were still terrible, and there was still little chance of survival. Lucy was told that "Frankie is the sickest baby in the country, and the sickest baby the hospital has ever taken care of." How Lucy didn't fall apart and give up is beyond me. How my parents didn't fall apart and give up is beyond me too. How do you even get out of bed when something like this happens? Lucy and my mom have similar answers. You just do, they say. You would give your entire life to take the pain away from your child. Frankie's mom said that at one point, she whispered in his ear and told him that it was "okay to go." She'd rather him die than struggle in unimaginable pain. She'd die just to spare him a minute of the pain. You keep going, because God made you a mother, and the instinct just takes over. For my mom, she didn't stop praying.
My parents didn't fall apart when I was dying.... THEY FELL TO THEIR KNEES IN PRAYER.
Lucy says that she and her husband weren't at all religious before Frankie got sick. But when she was told her child would likely die if not lose most of his body, she realized there was nothing she could do except turn to God. Even in someone who isn't a Christ follower, there is a point in everyone's life where they you are faced with something that either will make you walk towards Jesus or walk away from Him. Lucy chose to walk TOWARDS Him.
God spared Frankie's life, much like he did mine. It took a few weeks in a coma for his tiny body to start to normalize again. He had to have several skin grafts over the next few months to cover all the wounds. If you remember my post about skin grafts, you remember that they are HELL ON EARTH. It is the most painful thing you can imagine. How a BABY goes through this, I cannot even comprehend. Frankie's warrior mama Lucy fought everyday with the pain doctors to manage Frank's pain. She was brave and didn't stop. Even when she knew life as she knew it was forever changed, she continued to walk forward.
She had an amazing support system. God put people around her that helped to her to be as brave and strong as she needed to be. THAT is why we need to take care of each other. We cannot get through these trials on our own, and we aren't supposed to. We aren't made that way.
Finally, FINALLY, Frankie went home. However, he was in a 24-hour pressure suit that would put pressure on his wounds in order to help them heal and prevent infection. His mom said the worst part was bathing him. He would scream in pain.
He was hospitalized again several times over the next few months for additional surgeries, one was a skin graft, and one was a staple that had gotten stuck in a wound and needed to be removed. All the while, He kept on fighting. He kept proving the doctors wrong.
Unfortunately, Frankie's story doesn't end there. His mother's worst nightmare came true a few weeks ago. To be continued in Part 2.
This last surgery had complications and required additional surgery and a hellish recovery. I've been in extreme, debilitating pain. I wasn't able to walk, move around, go the gym, go to the store, ANYTHING for a month. It was horrible, especially for someone whose heart is 90% running, 10% everything else. (kidding) But really, I'm not myself when I can't run and to not even be able to walk has been depressing beyond belief. I've been down. Lonely. Feeling a little sorry for myself.
Maybe a little too sorry for myself, because God stepped in and refocused me. Just when I thought nothing could possibly be worse than what I went through, I learned about 2 year old Frankie.
A nurse who I met through the National Necrotizing Fasciitis Foundation (there aren't many of us, so we all get to know each other) invited me into a closed Facebook group for survivors of necrotizing fasciitis. And boy, I've gone through a gamut of emotions since joining this group. It's basically a forum where survivors of nec fasc and their families can share their journeys, vent their frustrations, fears, and heartbreaks, and celebrate their successes. As I started to read through the journeys of others who have walked this strange and horrific path, I cried my heart out. Finally I had found a group of people who understood this nightmare. There aren't many of us. Less than 300 and that includes family members. Still, hearing that others shared the sleepless nights, the horrific pain, the sadness of losing skin, muscle, limbs....losing what our bodies once were...the PTSD, the nightmares, the losses....it gave me hope. It made me realize that I can too be brave enough to fight this fight and come out on the other side.
I came across the journey of Frankie. Frankie was only a little over one year old when he was diagnosed with nec fasc. Even thinking about it breaks me. How can a baby be subjected to this nightmare? It isn't fair. This isn't a disease that you have and then one day move on from. If you survive at all, your health is changed forever. You likely are missing limbs, organs, large areas of limbs. The surgeries beyond painful as the surgeons' only way to save the patient is to remove the tissue affected by the infection, which is generally skin, fascia, and muscle, and when it goes too far, the entire leg or arm. How in the hell a baby could get this made me side-eye God at first, to be honest. I don't have the answers. I know that God doesn't GIVE us these nightmares. He loves us. It hurts Him to SEE US HURT. They happen as a result of us being humans and this being Earth. We aren't in Heaven. These things won't happen there, and that is a beautiful and hopeful thing. All we can do is trust that the things that happen on Earth are part of HIS GREATER PLAN. That is really freaking hard to come to terms with. My BIG happened for a reason. It's part of a BIGGER plan that I rarely understand, although as I've fought my way through recovery, I sometimes get glimpses of understanding. I know that we are here on Earth to practice loving each other so we know how to be more like God. And how to love in Heaven. And we're here to take care of each other. Walk beside each other. And maybe I wouldn't have learned those lessons without going through this. I can't speak for Frankie or any other baby who undeservingly goes through something like this. All I can do is pray and trust and do what I can to love Frankie and his brave mama and his family. Walk beside them. Like so many have walked beside me.
Frankie lives in the UK. He was a normal, beautiful, blonde-haired, blue-eyed, healthy toddler when he developed nec fasc. Last April, Frankie developed a high fever one day and wasn't acting like himself. As his fever rose quickly to over 102 degrees, his mom Lucy became worried and took him into the hospital. As she brought him in, she noticed a small bump on his back that had started to become warm and red. When Frankie was admitted, he was already in organ failure and shock. Blood tests confirmed that Strep A (the bacteria that if aggravated can turn into nec fasc), and within hours, it spread all over his back, sides, part of his chest, and legs. The doctors believed that he developed the infection from a little cut on his forehead he'd gotten from bumping his head. They believe the bacteria somehow got into the cut and lay dormant for a few days and then started to spread and attack. Frankie's mom was told there was very little hope and that all affected skin, tissue, and muscle would have to be removed, and fast. If he survived at all, this baby would have large chunks of his body missing.
After a 9 hour surgery, Frankie was still alive, although a 7 inch by 9 inch section of his back was gone, parts of his shoulder, and sides. He was in a coma, his vital signs were still terrible, and there was still little chance of survival. Lucy was told that "Frankie is the sickest baby in the country, and the sickest baby the hospital has ever taken care of." How Lucy didn't fall apart and give up is beyond me. How my parents didn't fall apart and give up is beyond me too. How do you even get out of bed when something like this happens? Lucy and my mom have similar answers. You just do, they say. You would give your entire life to take the pain away from your child. Frankie's mom said that at one point, she whispered in his ear and told him that it was "okay to go." She'd rather him die than struggle in unimaginable pain. She'd die just to spare him a minute of the pain. You keep going, because God made you a mother, and the instinct just takes over. For my mom, she didn't stop praying.
My parents didn't fall apart when I was dying.... THEY FELL TO THEIR KNEES IN PRAYER.
Lucy says that she and her husband weren't at all religious before Frankie got sick. But when she was told her child would likely die if not lose most of his body, she realized there was nothing she could do except turn to God. Even in someone who isn't a Christ follower, there is a point in everyone's life where they you are faced with something that either will make you walk towards Jesus or walk away from Him. Lucy chose to walk TOWARDS Him.
God spared Frankie's life, much like he did mine. It took a few weeks in a coma for his tiny body to start to normalize again. He had to have several skin grafts over the next few months to cover all the wounds. If you remember my post about skin grafts, you remember that they are HELL ON EARTH. It is the most painful thing you can imagine. How a BABY goes through this, I cannot even comprehend. Frankie's warrior mama Lucy fought everyday with the pain doctors to manage Frank's pain. She was brave and didn't stop. Even when she knew life as she knew it was forever changed, she continued to walk forward.
She had an amazing support system. God put people around her that helped to her to be as brave and strong as she needed to be. THAT is why we need to take care of each other. We cannot get through these trials on our own, and we aren't supposed to. We aren't made that way.
Finally, FINALLY, Frankie went home. However, he was in a 24-hour pressure suit that would put pressure on his wounds in order to help them heal and prevent infection. His mom said the worst part was bathing him. He would scream in pain.
He was hospitalized again several times over the next few months for additional surgeries, one was a skin graft, and one was a staple that had gotten stuck in a wound and needed to be removed. All the while, He kept on fighting. He kept proving the doctors wrong.
Unfortunately, Frankie's story doesn't end there. His mother's worst nightmare came true a few weeks ago. To be continued in Part 2.
Wednesday, March 12, 2014
What is Necrotizing Fasciitis?
I am currently working on a post about a two-year old little boy who has necrotizing fasciitis... I met his mom through a closed group on Facebook for nec fasc survivors. She has page dedicated to Frankie (that's his name) and she described what nec fasc is in a way that is clear, simple, and easy to understand. There is not a lot out there on this rare, horrible, fatal (in many cases) infection. A lot of what I read about it is confusing... even with my background in the medical field. Before I post his story, I wanted to post her description of nec fasc so you all will have a better understanding of what the disease is. Credit goes to Lucy, his mom. She has done a ton of research over the last year as they have battled and Frankie has again and again fought for his life.
What is Necrotizing Fasciitis?
Necrotizing fasciitis (NF) is a bacterial infection. This bacteria attacks the soft tissue and the fascia, which is a sheath of tissue covering the muscle. NF can occur in an extremity following a minor trauma, or after some other type of opportunity for the bacteria to enter the body such as surgery.
The Group A Strep infection (flesh eating bacteria) is most common with minor trauma. This is what caused the NF in my little prince.
People have developed NF after a C-section, after abdominal surgery, after scratching a rash, after giving birth vaginally, from a tiny scratch, after bumping a leg with a golf bag, after a friendly punch in the arm from a buddy, after a little cut on the finger, after a cut on the foot, after a rug burn, after having a routine blood draw in a physical exam, after a broken arm, and after a broken leg, and also from no known trauma at all.
In order for someone to contract NF, the bacteria must be introduced into the body. This occurs either from direct contact with someone carrying the bacteria, or because of the bacteria being carried by the person him or herself. All things on earth carry bacteria. Some good some bad. Strep A can live on your skin or in your throat and not cause any problems. If you have sore throat and had it checked out doctors might say you have a strep throat.
Although many people carry strep A, there are various strains of the bacteria, some of which are more powerful than others and as in Frankies case it was the lethal strain that entered his body.
When the infection is caused by the lightening fast Group A Strep bacteria, the specific bacteria which causes the flesh-eating disease, people can go from perfectly healthy to death's door in a matter of days.
It is important everyone knows about this infection because a person does not need any predisposing conditions to be prone to developing necrotizing fasciitis. It can happen to anyone...young, old, adult, child, any race, any size, healthy or not. No one is out of danger. You do not need to have a weak immune system to get this.
The name "flesh-eating-bacteria" is a little sensational, but essentially, this is what the bacteria appears to do. It gets into the body, quickly reproduces, and gives off toxins and enzymes that destroy the soft tissue and fascia, which quickly becomes gangrenous (dead). This gangrenous tissue must be surgically removed to save the life of the patient. The bacteria also stealthily hides itself from the body's innate immune system, allowing it to spread rapidly along tissue planes. NF causes excruciating pain, dangerously low blood pressure, confusion, high fever, and severe dehydration due to the toxins poisoning the body. Unfortunately, NF sometimes occurs beneath the skin with few symptoms to explain the victim's symptoms. This results in a great many cases of misdiagnosis.
In addition to the tissue decay, the bacteria causes the rest of the body's organs to go into systemic shock. This may result in respiratory failure, heart failure, low blood pressure and renal failure. Basically, every system of the body can fail as a result of the severe infection and toxicity of the system. Frankie had had this infection in his body for 25 hours and so doctors expected his organs to fail. Frankie had 9 and a half hours of life saving surgery on 10.04.13 to remove everything on his back side and left thigh. We were told we needed a miracle.
NF is not a reoccurring condition. Once treated, the bacteria is eradicated from the body. During treatment, surgical sites are left open for a sufficient period of time and reinspected to be sure that the remaining tissue is no longer being destroyed. This was why doctors went back in 24 hours later to have a look at whether the infection had stopped. When physicians are confident that the infection has been stopped, the wounds are closed, typically with skin grafting. Frankie had skin grafted from his chest and legs onto his back and thigh. Then the recovery process starts which involves lengthy physical therapy, and long-term psychological, emotional and spiritual recovery. NF is truly a devastating disease. Frankie has to love with this for the rest of his life and will need surgery until he stops growing as the graft will not grow with him.
What is Necrotizing Fasciitis?
Necrotizing fasciitis (NF) is a bacterial infection. This bacteria attacks the soft tissue and the fascia, which is a sheath of tissue covering the muscle. NF can occur in an extremity following a minor trauma, or after some other type of opportunity for the bacteria to enter the body such as surgery.
The Group A Strep infection (flesh eating bacteria) is most common with minor trauma. This is what caused the NF in my little prince.
People have developed NF after a C-section, after abdominal surgery, after scratching a rash, after giving birth vaginally, from a tiny scratch, after bumping a leg with a golf bag, after a friendly punch in the arm from a buddy, after a little cut on the finger, after a cut on the foot, after a rug burn, after having a routine blood draw in a physical exam, after a broken arm, and after a broken leg, and also from no known trauma at all.
In order for someone to contract NF, the bacteria must be introduced into the body. This occurs either from direct contact with someone carrying the bacteria, or because of the bacteria being carried by the person him or herself. All things on earth carry bacteria. Some good some bad. Strep A can live on your skin or in your throat and not cause any problems. If you have sore throat and had it checked out doctors might say you have a strep throat.
Although many people carry strep A, there are various strains of the bacteria, some of which are more powerful than others and as in Frankies case it was the lethal strain that entered his body.
When the infection is caused by the lightening fast Group A Strep bacteria, the specific bacteria which causes the flesh-eating disease, people can go from perfectly healthy to death's door in a matter of days.
It is important everyone knows about this infection because a person does not need any predisposing conditions to be prone to developing necrotizing fasciitis. It can happen to anyone...young, old, adult, child, any race, any size, healthy or not. No one is out of danger. You do not need to have a weak immune system to get this.
The name "flesh-eating-bacteria" is a little sensational, but essentially, this is what the bacteria appears to do. It gets into the body, quickly reproduces, and gives off toxins and enzymes that destroy the soft tissue and fascia, which quickly becomes gangrenous (dead). This gangrenous tissue must be surgically removed to save the life of the patient. The bacteria also stealthily hides itself from the body's innate immune system, allowing it to spread rapidly along tissue planes. NF causes excruciating pain, dangerously low blood pressure, confusion, high fever, and severe dehydration due to the toxins poisoning the body. Unfortunately, NF sometimes occurs beneath the skin with few symptoms to explain the victim's symptoms. This results in a great many cases of misdiagnosis.
In addition to the tissue decay, the bacteria causes the rest of the body's organs to go into systemic shock. This may result in respiratory failure, heart failure, low blood pressure and renal failure. Basically, every system of the body can fail as a result of the severe infection and toxicity of the system. Frankie had had this infection in his body for 25 hours and so doctors expected his organs to fail. Frankie had 9 and a half hours of life saving surgery on 10.04.13 to remove everything on his back side and left thigh. We were told we needed a miracle.
NF is not a reoccurring condition. Once treated, the bacteria is eradicated from the body. During treatment, surgical sites are left open for a sufficient period of time and reinspected to be sure that the remaining tissue is no longer being destroyed. This was why doctors went back in 24 hours later to have a look at whether the infection had stopped. When physicians are confident that the infection has been stopped, the wounds are closed, typically with skin grafting. Frankie had skin grafted from his chest and legs onto his back and thigh. Then the recovery process starts which involves lengthy physical therapy, and long-term psychological, emotional and spiritual recovery. NF is truly a devastating disease. Frankie has to love with this for the rest of his life and will need surgery until he stops growing as the graft will not grow with him.
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