Flap Surgery
First and foremost, I want to say THANK YOU for showing interest in reading about my experience of a flap surgery. I’m sharing this story in hopes of spreading awareness to others who might be in a similar situation and/or help prevent it from happening to them. I also want to mention I take very good care of my body and I’m not looking for nasty comments or pity.
In March of 2018 I noticed a lump on my neck. It was very painful to swallow anything and very tender to the touch. I was concerned and went to an ear, nose and throat doctor to get it checked out. She did a biopsy and put me on 60 days of clindamycin hoping it was just an infection. The antibiotic completely wiped out my system {take probiotics people} and I was diagnosed with clostridium difficile colitis, aka C-Diff aka NO JOKE. I was the sickest I had been since my initial accident. The C-Diff situation deserves its own blog in itself, but it is how my little red dot all began.
My nurse was cleaning me up during the end of my hospital stay {cdiff causes constant diarrhea and vomiting} and she noticed a little red dot on my left ischium {butt cheek bone}. OH and by the way the lump on my neck went away when I was treated for the cdiff. My heart dropped when I saw my nurse grab her camera and take a picture to monitor it. I was embarrassed, scared and had no idea what I had done wrong because I’m always so anal about my body. The answer to that is I was simply living a little too much at the time. I was totally aware of the potential pressure sore at this point and honestly didn’t think it would ever actually happen to me. I had an alarm on my phone and had my friends and coworkers to remind me to do pressure relief. My philosophy has always been to not let my injury define me and I will do everything I did before my accident, just different. So after the cdiff I continued to work my butt off every day in retail, afterwards I came home to sit in my beach chair for HOURS every single day to bake and continued dumping water on myself to stay cool. Little did I know that the little red dot would escalate SO quickly. Staying wet, sitting in the sand, my beach chair, my wheelchair, riding in the boat and riding my fourwheeler plus not eating as much as I should all came into factor when I realized the little red dot was now a real WOUND. I finally went to the doctor at the Outer Banks hospital and found general surgeon who helped me a lot during the first stages of the ulcer. He advised me to keep it clean and covered; that I did. He also told me to stay off of it completely; that I did not. {c’mon Doc, you just told a 21 year old beach girl to lay in bed for the rest of the summer} I will add again, I continued to take excellent care of my body, way better than before really... but my butt was just a little too bony and I was a littttlllleeee too active. As summer slipped away and further into fall we got- it wasn’t healing. I wasn’t eating. I was tired. I was in pain. I was sick. Very sick. I finally stopped working in October of 2018 and told myself I was going to heal. No matter what it took. Forget hunting season, forget holidays, I’m sick of having a hole in my butt. Mind you, I don’t have control of my bladder or bowels so using the bathroom is challenging to begin with... then adding a wound right near everything was twice the struggle.
So much has already happened to me that I can not control; I’m not going to let something I CAN control... kill me.
Fast forward through weeks of being really sick, not eating, not drinking, no energy and no sleep... I was referred to a wound doctor in Chesapeake, Virginia. I started seeing him twice a week. I was advised to pack it with gauze dampened with saline and a dry dressing on top. I did this for a while and nothing was improving. My doctor then said that he needed to do a debridement of the tissue and/or bone and would also get a culture to make sure there’s no infection. I woke up out of surgery with the hole twice as big and with a wound vac. I was admitted for a week and then sent home with a picc line for IV antibiotics. The wound vac ended up being more trouble to my skin other places than it did good. The machine malfunctioned 24/7 and it leaked constantly. The hassle outweighed the improvement big on this one but it was the doctors orders at this point. So, after 60 days of giving myself IV antibiotics and hassling that machine in the meantime, I was nearing the end! Finally. My wound was a bit smaller on the outside but still huge tunneling on the inside. {the biggest my wound ever got was 9cm deep} I was feeling 10x better and was so ready for summer time, almost a whole year later after discovering it and working so hard to take care of my body. I then started working again! The next appointment, I laid in the MRI machine and thanked God for getting me this far and I just knew He had healed me. I met with the doctor after to get the results and I was on top of the world because I just knew he was going to say “okay, great job, keep it clean and packed, stay off of it...”
But that wasn’t the answer I got. After waiting an hour, he finally comes in and looks at me and nonchalantly says “Alright so, the osteomyelitis has spread throughout the whole left side of your pelvis and you need to have it removed or something. I can get you in contact with surgeons somewhere that’ll do it”
I said “Okay great, but question.. do you think when you did the debridement it could have spread then?“
Doc- *shrugs shoulders*
“Eh, it could have”
“Alright doc, thanks for your help have a good day”
I hold my tears back for my two hour drive back home in disbelief and get back home to my family and let it all out. We decided we’ll start searching for other doctors but we’ll wait for the referral in the meantime.
I didn’t want to go through this again, Jesus, but you’re throwing it my way and I can take it, so here we go.
I waited a week or so for my referral and was pretty much sepsis at this point. I made an appointment with an orthopedic at Duke to just see what they would say. {still haven’t got the referral} I packed for a week when Mom and I took off in my truck to go and it’s a good thing I did. I arrived to the clinic and the doctors took one look at me and said “I’m calling the emergency room to let them know you’re on the way... you need immediate help that we can’t do here”
Aye, aye, capt’n!
I got to the emergency room and they were expecting me. I saw the triage nurse, got an iv and was started on fluids... I was told it would be awhile until a room was available. 11 hours we sat in the Duke emergency waiting room. There was people throwing up, having allergic reactions, gun shot wounds, fights and colds… and so overloaded people were sitting on the floor. They finally had a room available and from then on it was the best care I have ever received and I still don’t have one complaint about it. Mind you this is coming from a fan of the lighter blue.
The orthopedics team, plastic surgery and infectious disease team all came to meet me at three in the morning. They asked questions and were concerned in ways that NO doctor ever has been. I got a new MRI the next day and sure enough, the osteomyelitis was definitely in my pelvis and it was fixable but there was a good chunk of my ischium that needed to be removed.
“Great, doc! Let’s do this, I’m ready”
No ma’am, slow down, stop, hold up, back it up, Mckayla.
My prealbumin level was a 3.2 and the average for a healthy 22 year old is around 20. The doctors wouldn’t do surgery until it was at least a 19 because my body wasn’t strong enough to heal from surgery. I was malnourished and in the computer anorexic. I wasn’t eating, on purpose? No. I just didn’t want food, it was disgusting and I felt nauseous every-time I did eat. {symptom of infection, because ya girl will normally DOWN a double quarter pounder with cheese, a medium fry, some hot mustard and a large coke} Of course throughout this whole time everyone is stressing the protein shakes, the protein powders, Ensures, fish, chicken, nuts... eh. None of it worked for me. I stayed at Duke for a week to get my body under control and get a plan. I was bummed because I wanted to get surgery over with but then again, grateful because I knew God had his own plan and I couldn’t be laid up all summer. I was released and they put me on a medicine called “Megestrol” to enhance my appetite. It totally worked and I still notice a huge difference in my appetite when I don’t take it! The plan was a wet to dry dressing for my wound and eat, eat, eat. I had to get stronger and come back to have part of the bone removed and a flap surgery to cover the wound.
So from the end of May till January I did a wet to dry dressing for my wound and tried to keep the symptoms of the infection under control.
HOLY MOLY. The Lord is amazing y’all.
In November Mom and I ventured back out to Durham. I got a new MRI and met with all my doctors again. The orthopedic comes in the room and says “Mckayla, I really thought I was just looking at the wrong MRI because the amount of surface area that was infected on the bone has LESSENED a significant amount and I really don’t have an explanation as to why... because that doesn’t happen”
I shouted “JESUS”
Doc smiled.
Not only is it unlikely for a bone infection to just “go away”... but my albumin levels were all the way up to 19.2 and ya girl was celebrating. I got my body strong enough for surgery within three months! We planned my flap surgery for January 10th because I wanted to ‘enjoy’ the rest of hunting season and get through the holidays. The orthopedic would go in and remove the infected bone then the plastics doctor will do the flap. A flap is where the tissue is lifted and moved to recipient site with blood supply still in tact. This is why the recovery process is so important in this surgery, if the skin doesn’t get blood supply, it will die and the surgery would fail.
January 10th I finally had the surgery I waited almost two years to have. The orthopedic said he didn’t take as much bone as he expected, he basically just drilled the bad infected parts out. Plastics did say he had a little more tissue to take out then expected but everything went just how the text book said it should. I wasn’t nervous for the surgery itself, that was a piece of cake. Again, the recovery of a flap surgery that I always heard was so rough, especially for a person with a spinal cord injury. I was transported home in ambulance after a five day hospital stay. Since surgery I have learned how to live on my stomach and my independence was completely out the window the second I went into surgery. That has been the hardest part for me. My amazing Momma and sisters have been live savers with keeping my house tidy and waiting on me hand and foot. I’m now a month and a couple days post op. Last week I had the stitches and drain tube removed. I have two more weeks till I hit my six week mark and can slowly start bending at the hip and putting small amounts of pressure on the incision. If my body continues to heal, I will only have twenty two more days of IV antibiotics. I’m managing a lot better than I had thought I would and I feel like a million bucks already. I cannot wait to start therapy and slowly exercising to get strong again. I have been sick for two years so it’s going to be amazing to be able to live my ‘normal‘ wheelchair life. Not getting another pressure sore will be my ultimate life goal but this year… it’s to LIVE. I want to have fun, be productive and just enjoy this fresh salty air.
Throughout this process I naturally questioned everything and was so worried about getting thrown backward after how far I’ve come in the past 5 1/2 years with a spinal cord injury. But yet again, I’m so grateful for the trials and tribulations because I wouldn’t be the person I am today without this wheelchair and all the struggles it brings me.
Thank you to everyone who has supported since my injury but also I’m especially grateful for the special support the past month. The kind words, cards, phone calls, messages, prayers and the FOOD... THANK YOU.
Here’s to sunshine and smiles, all 2020. In the meantime, enjoy the vivid images of the evolution of my little red dot.
xo,
mckayla
These pictures are of the most significant stages of my pressure sore from May of 2018 to January 2020. This is raw, this is real, this is part of life with a spinal cord injury.