Tim Burke

I've been meaning to compose my husband's story and send it to the NNFF for some time now, only to realize I couldn't bear the pain. Our journey and battle with NF began last year, July 16, 2010. Following are excerpts from my blog. Day 1 July 15, 2010 The day started with Tim's bags packed for the annual guys golf tournament. Golf clubs, horseshoes, typical man weekend attire. A kiss goodbye and the "I love you's" were said around the family, and off he went..... Little did either one of us know this boys weekend would change our lives forever. Day 2 Friday, July 16, 2010 Cell service very limited in Arnold, CA so I knew I wouldn't hear much from Tim, but wanted to know that at least they boys made it to the mountains ok and that they were having a good time. From what I knew they were golfing Thursday, Friday, and Saturday. As I rolled along with my Friday, little did I know that Tim's painful journey was just beginning. He woke up and noticed a small red dot on the inside of his right ankle, slightly above that roundish bone (no idea what that bone is called.....). He later described it as a bit itchy. As the day went on the guys finished their round of golf, headed back to the cabin for typical man stuff, bbq, beers, and a ping pong tournament. By this time Tim's lower leg was beginning to hurt and swell up a bit. So bad that he had to pull out of the ping pong match and go lay down. For those of you who know Tim he's not a quitter (he and his friend Brian were winning) and for him to pass up good food and beer, something was wrong. Meanwhile me and the boys headed up to Tahoe for a fun filled weekend with Jenny and Emily. Day 3 July 17, Text from Tim 3:54pm "Tried to call, had to to go urgent care. Got spider bite or something, it swelled up today. Got medicine for it". I tried all afternoon and into the night to get a hold of Tim with no luck. Naturally I didn't sleep a wink. Day 4 July 18, 2010 Texts from Tim: 8:51am Still really swollen, on our way home. 11:05am Swelling getting worse. Matt and Andy think I should go to the hospital. 3:30pm Tim admitted to hospital via ER. Meanwhile it was time for me and the boys to pack our bags and head to the hospital. All I knew at that point was Tim was on iv antibiotics and pain meds, and within 24 hours would be feeling much better. 8:30pm The boys and I went to see Tim at the hospital. His leg was super swollen and he had 3 quarter size blisters on the inside of his foot. He had smaller blisters around the lower leg as well. He also had a red line traveling up his inner thigh. All I knew at that point was he looked like he was super sick and was in a ton of pain. For those of you who are medical enthusiasts, when he was admitted his white blood count was at 33,000. That is high. Day 5 Monday, July 19, 2010 This isn't what I planned for summer fun, supposed to be celebrating Jennifer's 40th today drinking a Golden Eagle. Instead, back to Sequoia to check on Tim. Rough night, pain much more intense. Oh, and the quarter size blisters have now formed together to create a huge egg size blister, yuck. Day 6 Tuesday, July 20, 2010 Tim's pain is more severe, the morphine and vicodin were not doing the trick so they switched him to some stronger stuff. A doctor came in, looked at the blister and decided it was time to lance and drain it. Oh, and at this point the Infectious Disease doctor had looked at Tim's chart and was brought in to consult. They thought it could be MRSA. My dear friend Lisa who is a nurse had been at my side for a while now had talked about MRSA and that Tim should be treated as an isolation case. Great, Sunday night the boys and I kissed him on the lips. One more thing to stress about..... The doc didn't waste any time on that baked potato size blister, no local. Within minutes his lower leg was open for the lancing to begin. He asked Tim what he thought happened to him while scraping the now open and exposed for the world to see inside of his heel. Tim was great, trying to hold a conversation while wrenching in pain, me trying to crack jokes, all while there is a softball size open wound in the midst of things. White blood cell count 24,000. Great improvement from yesterday. Clearly things must be looking up. Right? Day 7 Wednesday, July 21, 2010 Antibiotics not working. They switched them. Can't recall what to what, but now that they have been switched we are bound to turn a corner. As I embark on day 3 of hospital life and get really good at pawning my kids off to great friends I think to myself well that sucked, but soon enough we'll be home. Home in time to work a bit and get ready for our big family vacation. Later that day we were introduced to Dr. Graw, the surgeon. He came in and explained that since the antibiotics weren't working fast enough the best thing to do was "open the leg and relieve some of the pressure". Seemed reasonable. Tim was onboard, let's get this done so I can get out of here attitude. He didn't ask many questions, I had a ton. He was great, explained exactly what he was going to do, what we could expect, etc. . By this point his leg had grown to an unbelievable size, and he really started to complain about his thigh. The red line had grown higher and wider. White blood cell count 14,000. The past few days we kept asking if the source of this was from a spider bite. What I didn't realize then was they were not concerned with the source, just had to control what they were dealing with. The labs didn't provide anything concrete. Off to the operating room tomorrow..... Day 8 Thursday, July 22, 2010 Surgery #1, the big day. Dr. Graw was amazing. He told both of us exactly what he was going to do, a simple debrievement of Tim's lower leg. Piece of cake. They took Tim to the operating room in his bed. I recall trying to have a discussion with Tim just prior about the important stuff; in the event he didn't come out, couldn't make medical decisions on his own, etc. He wanted no part of that. Not sure if it was the narcotics, fear, or what but that didn't happen. 3:30 pm Surgery over. I've never been "the one" in the waiting room anxiously awaiting a doctor, my husband's doctor. Very surreal feeling. Doc comes out. Good news; the infection didn't go into the muscle or the bone, bad news it's Necrotizing Fasciitis. I had no idea what that was. He tried to explain it to me, but all I heard was, "don't go home and google it". It's bad, very bad, and that was not the first surgery for Tim he went on to explain. "We are keeping a close eye on his thigh, white cell count high, tissue culture going to the lab, constant monitoring in ICU"..... ICU? Isn't that for really sick people? I recall going home to get some rest before I Mw as able to see Tim. I did exactly the opposite of what Dr. Graw advised, I googled Necrotizing Fasciitis and to my horror I now knew what I was dealing with...... Day 9, July 23, 2010 Surgery went well, wound vac absolutely amazing. Tim in tons of pain. Upper thigh improving!!! Edema still there, but red line receded. Doc says keep an eye on the leg. White cell count back up...... I can't recall the number. Day 10, July 24th, 2010 Tim sick, woke up on and off nauseous, Dr. Graw finally comes in to check Tim out. Determine that the infection is running between the muscles, and decision made to go back in the next day to drain more (surgery #2). Had to review with the MRI team as fluid build up on the knee. That was not fun. Gigantic needle straight in his knee to check the fluid. Good news is the surgery won't entail getting into the knee, Dr. Graw wants to avoid that if possible. Day 11, July 25th, 2010 9 am surgery, 10:30 surgery done. Dr. Graw had to cut the sapphenous vein out, it's the main vein that runs in the leg (not good). And had to cut more into the foot and knee, not what I wanted to hear at all. This by far was the worst pain I've seen Tim in. I'm really scared. They also did an ultrasound to check his gall bladder and sludge, none for each. Phew, ok whatever that was... Chest X-ray clear. Thank God for the small miracles. Day 12, July 26, 2010 Diladed is Tim's new best friend. Tim has not complained at all, but finally confessed that yesterday was the worst day ever. The anesthesiologist apparently gave Tim a spinal, which wore off too soon, so post op he was basically trying to play catch up with the pain meds. It was horrific. Day 13, July 27, 2010 Focus on pain management. Can't remember the white blood cell count.Still in ICU. Day 14, July 28, 2010 Focus on pain control. Decent day given the fact that Tim's leg is wide open. Physical therapy came in. Today he got out of bed and used the walker! Amazed and scared. He was in excruciating pain but did it!!! Day 15, July 29, 2010 Surgery #3 scheduled for 3pm. Closed up the leg! Infection at a manageable point. Sending culture to the lab. Ankle still open with the wound vac. Red line gone, edema slowly going down. New concern is Tim's foot. At this point Tim is heavily sedated. Day 16, July 30, 2010 MRI #3, new concern is the foot and ankle as they are not healing as they should. PT back in to try the walker, up and down the hall. A bit hard with a gown, and a wound vac, but he did it. 23 degree knee movement and very limited ankle range of motion. Pain ok. Day 17, July 31, 2010 Still in ICU, white cell 10,000 - good. Labs so far negative, but waiting for finals. Still concerned about the foot swelling. Late day, finally moved out of ICU. Moving to CSU, and getting ready for surgery #4 in 2 days. Day 18, August 1, 2010 Foot bad, lots of questions for Dr. Graw. Given a list from occupational therapy and physical therapy on what to purchase when we go home. Will we ever go home? Day 19, August 2, 2010 4pm surgery. Not what we wanted to hear. They had to cut into his foot and compromised his sensory nerves. But no muscle, I guess that's the consolation prize. Doc thinks the infection is gone, but sending more tissue to the lab. Waiting on oral and IV antibiotics orders. Home wound vac delivered. Post surgery Tim moved rooms again, back to the original floor he was admitted to. And they are telling us we may go home by the end of the week! In addition, he walked up and down a flight of stairs (with crutches of course). Amazing, absolutely amazing...... Day 20, August 3, 2010 Foot badly swelling, not sure what is going on but he's not trending the way the doctors want him to. Foot surgeon coming in to take a look. They want him to elevate as much as possible, other than physical therapy. They told us he's doing great with PT, upper body strength improving. Considering it's been almost a month in complete bed rest, I'm very proud of him. Day 21, August 4, 2010 Dr. Graw removed wound vac (PAINFUL). He wanted a better look at the wound and to see if there was a hematoma. Horrible procedure, done in the room. Physical therapy called off, complete elevation for 48-36 hours. He needs to be closely observed before they can consider sending us home. They think the bacteria is gone, white blood cell count 10,800. Still lots of pain. I feel like we just took 10 steps back. Not a good day. Some things to consider and keep me busy between doctor rounds, and pain management. Insurance coverages Home nursing home physical therapy Medical supplies In network: out of network Day 22, August 5, 2010 Dr. Mullins the foot surgeon arrives. Removed the dressing and to my horror I see the inside of Tim's ankle and foot. I could see it all, tendons, muscle, the layers of the skin, everything. Dr. Mullins determined that Tim had gotten a secondary bacteria infection on his foot and the tissue on the top of his foot was dead, and he will need another surgery to remove the dead skin. This would mean surgery #5. Not a good day. But we knew something was wrong when his foot was getting worse as the infection seemed to dissipate. At this point they had to keep the wound vac off, and just use dressing. The good news was the first infection was gone! Labs normal! One small step forward. Day 23, August 6, 2010 Going home day! We left the hospital at 6:30 pm. Nurses all set up to do the first home visit. Day 24, August 7, 2010 First day home. We are both wiped out. I'm administering the pain meds, and tracking to make sure what he's taking and when. Dumping out the urinals, oh and the commode... fun times. Making meals, and trying to keep them healthy and Tim hydrated. First visit was by the nurse, 2nd occupational therapy, no PT today. Day 25, August 8, 2010 Today was a blur........ Day 26, August 9, 2010 Adjusting to home life, exhausted. Tomorrow we are taking a field trip to the plastic surgeon. OMG, how am I going to do this. Just getting in and out of the car may send us both over the edge. Day 27, August 10, 2010 Dr. Sen explained the next surgery. Not what we were expecting. We thought it would be the last. Remove the dead skin and do the skin graft. Nope. Next surgery just to remove the dead skin. Need another 4 weeks to heal then the skin graft. August 24, 2010 Had to go back for more lab work, new infectious disease doctor who wanted a full new panel. Tim not happy but he knows it's best. New antibiotics, gave him a stomach ache, thought he was going to blow chunks in the car. Talked to Santo (nurse dedicated to the case) and got some lovinox business cleared up. 90 day supply for $80. How much is this all going to cost? Anxious to meet with plastic surgeon doc tomorrow, will find out (hopefully) when the next surgery is. As of now wound vac and leg elevation are strict orders. Meanwhile kids started school, thank the lord!!! Worst Day Ever.... September 10th, 2010 4am: Wake up and find Tim already up and ready to go. Need to be at Stanford hospital by 5:15am. We are both anxious, fired up, ready to be done with surgeries. Today will mark surgery #6, skin graft. Close 'em up. 7:30: Tim in surgery. I'm settled in, watching the surgery board like crazy. It will be a couple hours. 9:15: Tim's status "In Closing". I'm busy working on my computer, getting ready to send everyone an email to let them know Tim's procedure was a success. But no..... Tim's sister texting me like mad, calling me, what is going on??? I didn't' want to answer the phone as I knew Dr. Sen would be out any moment to give me an update on Tim. I couldn't miss my opportunity. Tim's dad died. Quick, sudden, they tried to revive him. I'm in shock. I swear to God he knew Tim was ok and felt it was his time to go. Nonethess, how was I going to tell Tim? What do I do? How much more can he take? I can't do this, alone? I'm petrified. Noonish: Tim in his SEMI-private room. I grabbed the nurse and told her what just happened. Poor thing, she was speechless. Sent me out in the lobby and told me to wait for the Social Worker. Within 2 hours Tim was in a private room. Now the hard part. Got him settled, stood by his bed. He asked me what was wrong. I looked him in the eye and he asked what was wrong, then in a nano second said, "he died, my dad died didn't he?" I burst into tears. The rest of the day was a blur..... More Rounds of Doctors.... November 1st, 2010 Tim is doing great, embarking on his 3rd week of outpaitent physical therapy. This week is focused on numerous follow up appts. Dr. Mullins for the physician pedicure (use your imagination....), Dr. Sen for the follow up to look at swelling. Compression sock ordered. Dr. Graw for follow up as it's been a while since they've seen each other. And Dave for some good old fashioned physical therapy. Wheel chair pick up this week. Goodbye, good riddance, won't miss you at ALL. Giants Parade AND Tim takes his first steps!!!! November 3, 2010 We were watching the World Series Giants parade while eating dinner when I received the best gift ever. My determined and strong husband took his first steps (assisted with a cane) ! Just a few, nothing spectacular and no audience to watch the marvel unfold, just as Tim would want it. You are my hero and inspiration!!!! He can walk! November 29th, 2010 I came home from work, tired, hungry, need a glass of wine. Dinner was delivered (thank God!!) and I'm standing in the kitchen talking to Tim when I suddenly realize he's holding 2 dinner plates and walking unassisted!!!! HUGE milestone. So proud of him! Time..... December 3rd, 2010 Tim slowly realizes it will take him much longer than expected to get back to his normal lifestyle. His new normal may never be the same. Work is way out in the future which is really settling in for him. This was not in the plan for Tim, but the effects that NF took on his leg and entire body will be with him forever. July 15th, 2011 I'm back in Tahoe, have been several times in the past year, but this time it feels very eerie being back to where my family embarked on an ugly and horrific journey. Back here with the kids, only this time with Tim as well. I can't believe it's been one year since Tim's amazing story. You never think at 39 years old you will be a widow. Well I certainly came close. Tim was on the brink of death one year ago. I can confidentially say that I have never been so happy to have a year pass by. Just a little over a year ago, Tim began a fight for his life, a fight to save his leg, and a long painful journey both inside and out. It amazes me to see him today. Standing big and tall, in very good shape and most of all healthy. A year can be a tremendously long and short time. Last November I couldn't forecast holding hands walking down the street with Tim, but was so thankful for whatever the future had in store for us. Today he is back in his groove, with me and the boys, and he's alive! 26 days in the hospital, 6 surgeries, and his dad's passing in the midst of surgery #6, all rolled into 8 short weeks. That does not even come close to each day since Sept 10th when for Tim his journey really began. I have yet to document each of the 26 days. It's painful to recount each diagnosis, setback, and surgery. July 16th - September 10th 2010 are pretty much a blur to Tim. I can account for every minute of every day between those 8 weeks. He thankfully can't. I can remember the sitting, the waiting, medical talk, OR's, MRI's, wound vacs, nurse rounds, friends and family with endless food and comfort. I missed my boys tremendously but they were in such good hands all I could do was thank God they were well taken care of while I was tending to Tim. I just kept thinking to myself, this is not my life I'm just having a bad dream and someone please wake me up. The grim future of what Tim was up against, was mind blowing. I can't even begin to describe what life was like when Tim was home from the hospital, fresh skin graft, and strict bed rest for 6 weeks. Think about normal daily maintenance we all do and then think of someone who can't get out of bed. Not fun, for anyone. September 10th, 2010 – Present Each day Tim has taken one step closer and closer to his recovery. September and October were horrible. Bedrest, no walking, bed to wheelchair. Oh but wait, Tim refused to use his wheelchair in public, except once, to watch Mason's baseball game. His dad's service even postponed to mid October until Tim could use crutches. It was awful, it was like time was standing still. Last Fall, I could not fathom where we are today. Tim has put in hundreds of hours with physical therapy, agonizing medical follow ups, and yet never complained, not once. Along the way, every day I would ask the same question, "how is your leg?". Response, "Fine". And the kids, talk about resiliency. My kids amazed me through the entire ordeal. I was thankfully able to shield them from the rock bottom horrific details of Tim's illness, and as they reflect on the summer of 2010 they would probably say it was the best summer of their lives. They both had moms doting all over them, giving them extra hugs and kisses knowing that neither Tim or were able to. Mason is my strong heart, watching over his little brother while they were with various families in Tahoe. From what the moms told me, they were always together and Mason made sure Bryce was taken care of at all times. Some people asked me how I did it. Well you just do, you find the strength, dig deep, and don't wallow in your present, as it will pass. I know I am stronger because of this, and I know our family is stronger because of it. Tim, you are my rock.