Trevor MacLean

This story is dedicated to my darling little boy, Trevor who contacted NF after a routine surgery on March 20, 2004. A day I will never forget. I thought I knew what fears were, but I learned during the following month that my fears are completely superficial. True fear is NF. Click for larger imageTrevor was being prepped to leave the hospital after a 4 day stay after bladder surgery. I could see that he wasn't himself, but after being on an epidural for 4 days, I could understand why. Mother's intuition, never let it go. EVER. I don't know what made me do this, but I suddenly had the urge to lift up his gown all the way up to his chest. (Trevor was 12 at the time and didn't need his mom poking around his groin, but I needed to look at the incision site for the 15th time I am sure, something wasn't sitting right with me) What I saw made my skin crawl all over. He had this bronzy colored patch of skin to the right of the incision site, surrounded by a very red and inflamed area. This was not there one short hour prior to my noticing this. Immediately I jumped to the nurses desk and demanded that someone come take a look. Over the next 2 hours or so, a dozen people were looking at this now rapidly growing area of discoloration on his abdomen and torso. I KNEW my son was going to die. I could feel it to the very core of my soul. I finally went to a nurse and demanded that she call a doctor. I told her my worst fears and that she needed to listen to my intuition. Thankfully, she took me seriously. As it was bladder surgery, a urologist was called in for the task. He took me aside, and said basically "listen mom, I think it is just some bruising from the invasive surgery, you should have nothing to worry about". I flatly told him that he was on the wrong track and that he didn't know what he was talking about. Months later when I got all of Trevor's medical records, I realize he was trying to protect me. He knew it was NF, and he is the one who contacted the infectious disease team and got the ball rolling towards to recovery. This all started at about 2:30 in the afternoon, and it is now approximately 6:00 pm, and I have paced the hospital more times than I can count. I was just trying to stay focused on Trevor, and what I knew was coming, the worst thing I would ever have to deal with as a parent. Final diagnosis, 7:00 pm. The head of the infectious disease team sat us down and told us the worst. They felt it was already penetrated into his organs, and that he must be rushed to surgery. Unfortunately, the best person for the job was in another surgery, and they decided to wait for her arrival. Immediately clyndamicin was started, and also piptazo. By this time, Trevor's epidural had completely worn off. Thankfully he had the epidural from the bladder surgery, it minimized his pain for at least a few short hours. But now, my boy was in pain, and drifting in and out of awareness. He was so tired, and so tiny, and scared. He knew he was really sick. You can't have 50 doctors nurses, x-ray techs, blood doctors, disease doctors, all over you poking and prodding you for something that is just routine. He knew. He was strong. I have never been so proud and so scared at the same time. When the plastic surgeon arrived to perform the surgery, she sat with us and very quietly and slowly told us that they felt that mortality would be 100%. The disease was so rapid with Trevor (It grew in front of our eyes about an inch and a half an hour, and of course it penetrates down as well, not just across the tissue) and because it was all over his abdominal cavity they gave him no hope. It was also traveling up his torso, right flank and lower back, and into his genitals. I should also say that Trevor is 13 yes, but a very tiny guy. 0% body fat on this kid, only weighs 72 lbs, and only 5' tall. Much much smaller than your average 13 year old. It is because he had such a thin layer of fat protecting the fascia they were fearing the worst. While they were prepping his for surgery, we came home. We spoke with our older son and my parents and prepared them for what was to be a goodbye to Trevor by the evening's end. We got back to the hospital 1/2 hour later (we live very very close) and they were ready for him in OR. Well, surgery one was not good. They removed over 72 square inches of his abdomen and right flank, and had to debride his scrotum as well. The fascia was black. They came out of surgery with no hope in their eyes. They decided to bathe him in the antibiotics, and hope for the best within the next 12 hours. Many more surgeries came and went. 11 in 8 days if I remember correctly. After the second surgery, (this is even stated in the operating report) we were given some good news. The doctor came to us and told us that she has literally seen a miracle. All of the black tissue of the fascia (remember it is necrotic and considered dead when it is black) was turning pink. His scrotum was turning pink. Patchy pink, but pink none the less. For the first time in 72 hours we were given a glimmer of hope that our son would make it through this hell he was living. Trev thankfully doesn't remember any of this. He was drugged to a complete state of unawareness. He has one memory from the ICU and first 4 critical days I will share with you. He told me that he felt his body dying one piece at a time, and from the ceiling he was watching everyone work on him. He told me that it was incredibly peaceful. Talk about sending a shiver through your body. Click for Larger imageTrevor's recovery is something amazing. Within 8 days he was on a wound vac system which creates blood flow to the area for incredible tissue regrowth. 6 days later, they were able to skin graft the area. The wound vac also shrinks the wound, drawing it together. With our boy, it worked another miracle. His "hole" was originally 12 inches long, and 6 inches wide. This machine changed all of that. When they grafted his skin it was down to approximately 9 inches long, and about 4 1/2 inches wide. Today, almost a year later it is still shrinking. It is 5 1/2 inches long, and 2 and a bit inches wide at the widest point.Trevor has an amazing spirit. He looks at this huge scar on his body and has the attitude "There is something great out there for me. I was given a test to see just how strong I really am. I passed the test with flying colors". Someone is looking out for my boy. He has absolutely no feeling throughout his abdomen, but by some grace of God, his scrotum has feeling, and so does his penis (they expected it to not have any feeling). He may have some issues with this later in life, and ultrasounds right now are very very uncomfortable for him. He can accept this, as he is alive, and his scar is a proud testament of the fight he WON. The photos are of Trevor and mom at a fundraiser for the hospital where his story was the #1 miracle story of the year to come out of Alberta Children's Hospital. The the fundraiser raised over $835,000.00! To all of you reading this and obviously somehow affected by this destructive bacteria, our hearts go out to you. We understand every feeling that is going through you right now. Thank you for taking the time to listen to a grateful mother.