Right hand surgery and other updates

Don had his right pinky and palm operated on 2/3/12 in a 3.5-hour outpatient surgery at the University of Colorado Hospital.  We are so excited that this is his last surgery related to the burn injuries.  Much like the left pinky, the surgeon cut into Don’s right pinky and released injured, scarred ligaments that were causing his pinky to curl inward, preventing him from being able to straighten the finger and would just curl tighter over time.  We’re very fortunate that his fingers were operable — many burn patients’ fingers were so badly burned that there isn’t much they can do to fix some of the worst damage, or even worse, they have to have fingers amputated.

The surgeon also fixed Don’s palm – specifically the soft tissue area between his thumb and forefinger.  He had a large contracture there — a thick, root-like scar that had developed when Don’s skin regrew after the fire.  It was such a strong scar that it was pulling Don’s forefinger and thumb toward each other, preventing him from being able to full extend his hand.

For the right pinky, unlike the left hand surgery on 12/5, no grafting was required.  But for his palm, the doctor needed a relatively large piece of skin to graft in where he removed the scar tissue.  He took the skin from Don’s right hip (left hand surgery he took skin from his left hip) creating about an eight-inch incision which the doctor sewed up with dissolvable stitches, taped up with surgical tape, then covered with a big sheet of Tegaderm (a clear sheet of plastic tape that covered the entire wound area).  Within the first 2 days, a fair amount of blood pooled under the plastic but not so much that it leaked out.  We were instructed to keep the plastic on for 2 weeks.  At one point about a week after the surgery, Don was getting out of the car and felt the stitches pull painfully and caused a bit of additional bleeding.

Eleven days after the surgery we ended up removing the Tegaderm early.  Based on what we researched on the topic, we realized, without getting too gross, that it should come off.  It was a bit nerve-wracking and we ended up pulling off some skin around the wound since it wasn’t quite ready to come off, but we got it off.  Underneath we saw that sure enough, he had pulled two stitches and they had created two oval shaped open areas along the incision line – it looked like when you wear a too-tight buttoned cardigan and gaps form above and below each button.

Almost two weeks after the surgery, on 2/16, Don’s surgeon removed the gauze that had been stitched into his palm to hold in the skin graft leaving a triangle shape indentation that looked like a piranha had taken a bite.  The Occupational Therapist made a splint for his forefinger/thumb/palm to keep the skin stretched out so it would heal with his fingers in the extended position.  He still has the pin in his pinky until 3/2 so she made a plastic cover to protect his finger from hitting the pinhead coming out slightly from his fingertip (ouch!).

He’s still wearing a stretching contraption on his left hand for that pinky, so he’s full of splints/contraptions on both hands.

We’re very excited to have completed our training, testing and badging and are now official volunteers at the University of Colorado Hospital, trained to work with burn patients and their families.  We’ve already met with one patient, a fellow cyclist.  He was struggling with a potentially fatal blood infection and still recovering from massive burn injuries (over 80% of his body), which included a partial foot amputation, but perked up considerably talking to Don about cycling.    It’s emotionally challenging work, but very fulfilling when you can bring even a little positivity to a patient’s day.

We also attended the monthly SOAR (Survivors Offering Assistance in Recovery) meeting last night and met several new people and enjoyed catching up with some we’ve met a couple times before.  Our goal as participants in the meeting is to share our story of the accident, the hospital stay and recovery and to help those just starting down this road to see the light at the end of the tunnel and to answer any questions.   Of course things are still unfolding for us too – this is a marathon, not a sprint after all and we’re only 16 months out.   Often in the monthly meetings there are those that are several years past their burn incidents and they certainly have a much broader perspective to offer.  But regardless of the individual’s situation, there are so many common experiences and feelings that it is of great comfort just to go around the room and share what is on your mind.  Last night we talked about Post Traumatic Stress Disorder and how fear of another burn-inducing incident can paralyze your life.  Don does sometimes feel a little stress when he’s in the furnace room and hears the hot water heater click on, but it’s a fleeting feeling.  I was going to say how lucky he is but it isn’t luck — he chooses to feel positive, to not live in the past, and he works hard at making positive steps forward in his recovery each day.

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Pin removal

This past Wednesday Don had the pin in his left pinky (I spelled it “pinkie” in the last post — apparently that’s the Scottish English spelling and “pinky” is the American English spelling – who knew?!) removed.  The doctor used a pair of pliers and twisted it back and forth to get it out — it was screwed in through the bone and the joint.  Ouch.  Here’s a picture of the pin with the key for perspective.

Check out how sharp the point is.

Right after the pin was removed Don met with Tara, his wonderful Occupational Therapist (he worked with her for months following the fire). She worked his finger through a series of exercises  – after 4 weeks with the pin in his finger, it was hard to get it to bend at all.   But she did get it moving quite a bit and after about 30 minutes of moving it around, we left with written instructions for hourly exercises during waking hours and a splint at night.

The next day (Thursday, 1/5/12), his finger was so swollen and throbbing, he couldn’t bend it at all.  It’s still swollen and painful today but slowly getting better.  We’ve been focusing on ways to reduce the inflammation so the healing could begin and he could get going on the flexibility exercises.  Otherwise, his finger will be stuck in a straight position.   To reduce inflammation he’s been taking fish oil, zinc, and NOW brand quercetin with bromelain (which has the added benefit of reducing the itchiness of his back donor site).  He’s been drinking green tea with fresh grated ginger added and putting ground flax seed and turmeric on his food.   All documented natural remedies to fight various kinds of inflammation.  Don hasn’t thought it wise to workout since the pin was removed because the added blood flow to the finger increases the swelling and pain.  But he’s going to give it a shot today since the downside of not working out is beginning to outweigh the downside of the finger issue.

Don is scheduled to have his right hand operated on Friday, 2/3 – his palm has a large contracture from the forefinger to the thumb that is preventing him from fully opening his hand and his right pinky is stuck in a bent position (same as the left pinky was).  His right hip will be the donor site for the skin graft(s) required.  Until the doctor is inside the pinky, it is unclear if it will require a skin graft or if the doctor will just be releasing ligaments surrounding the 5th PIP joint and not need to cut out scar tissue. But a large graft will be required to cover the area from his forefinger to his thumb. So this surgery will be much more extensive than the left hand was.  And we want to make sure his left hand is just about fully recovered before 2/3 when his right hand becomes immobilized.

At least we aren’t missing much up in the mountains since it hasn’t snowed yet this winter and it’s basically just a few trails open with manmade snow turned to ice from too many people scraping over it.  We’re hoping by the time we can ski in March, conditions will have improved.

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Hand surgery

On Monday, December 5th, Don had his left pinkie operated on to remove burn scar tissue that was causing the finger to curl inward, preventing him from being able to straighten it.  In a two-hour outpatient surgery, the doctor removed the pinkie skin and underlying scar tissue, released some ligaments (they regenerate – who knew?), inserted a temporary pin in the finger to keep it straight during recovery, then he took about a 4″ oval piece of skin from Don’s left hip as graft skin to cover the pinkie.  Don has a semi-cast on — hard shell on the palm side then wrapped in gauze and a thick Ace bandage all around his hands and fingers and 2/3rds of the way to his elbow.   His fingers are bent in the cast at a 90 degree angle, which causes a very claustrophobic feeling for Don — he’s dying to straighten his hand.  The donor site on his hip has a clear plastic bandage on over the surgical tape and stitches – it stays on until the doctor’s appointment on the 21st.  It seems weird to keep it on that long, but the doctor was very clear in his instructions.    The instructions were also very clear that the cast must stay on for the full two weeks between surgery and the post-op appointment.  From the endurance test this is causing Don, I’ll bet many have either removed it themselves or called in to the doctor’s office begging to have it removed sooner.  12/21 can’t come soon enough. But from everything Don has already recovered from, he is an accomplished endurance healer and is determined to not give in on this one.

Don needs more extensive surgery on his right hand – his palm has a scar that extends from the base of his thumb up into his index finger, causing his palm to contract inward and his right pinkie has the same scarring issue as his left pinkie, just a bit less severe.  Since recovery is 3-6 weeks (we’ll know timeline specifics once the doctor sees Don’s left pinkie on Wednesday), keeping him from skiing or biking, it’s hard to decide when to have the second surgery.  The second recovery will also be more challenging because Don is right-handed.  He’s considering having it done right away — first to get it over with all at once and second because the mountains haven’t seen much snow yet this season so we aren’t missing a lot.  If he waits until spring for the second surgery it will interfere with biking, so either way there’s an adjustment.  But well worth it in the long-run.

The doctor recommended that Don not workout at the gym for two weeks post-surgery to protect the hip area incision (donor site), but did say he could walk.  Don was able to make it the third day post-surgery and had to move his body and get blood flowing through his burn scars and muscles.  We felt the many benefits of exercise outweighed the risks.  He was pretty cautious about what he did at the gym (and kept the casted left hand above his heart the entire time) in the first few days, simply riding a stationary bike and walking on a treadmill, then has steadily ramped up his exertion levels each day — today he ran on the treadmill, road the exercise bike at a harder level, used the elliptical trainer and did some side-squats.  Throughout his recovery, Don has benefited immeasurably from his finely-tuned knowledge of his body, developed prior to the fire through a multi-year rigorous training regimen — he knows his body’s signals well enough that he’s able to do what it needs to heal without crossing the line to injury.  I’m sure this varies person-to-person and the doctors must provide recommendations that address the worst-case scenario to ensure patient wellbeing and safety, but we’ve learned that Don’s body tells him when enough is enough.

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It doesn’t take much effort to let the negative voices in your brain take over – the voices that tell you it won’t work, you won’t succeed, you can’t do it.  We are surrounded by critics and pessimists who feed on our fears.  You don’t have to go far to find someone to agree with your concern that it can’t be done, so better take the safe route.  Don’t even try to create your dream career – it’s crazy and will never work.  Go get that “safe” job and stay there until you’re 70.

I was that pessimist and critic not too long ago.

What I am most thankful for (and not just on the fourth Thursday of November, but every hour of every day) is that I no longer believe the fears.  Don’t get me wrong, I still hear and feel them occasionally, but it gets less frequent and I’m able to identify and dismiss the lies the fears are feeding me.  After everything that we’ve survived and thrived through, I know that anything I set my intentions to will come true.  I can do it.  It’s an amazing feeling and I would love to spread that feeling to as many people as possible.

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1 year anniversary

Many things have gone through my head today on the anniversary of the fire that sent Don to the University of Colorado Hospital Burn ICU.  One has been the time and order in which everything happened.  I went back to the Verizon Wireless bill from October and saw that Don called me at 11:14am and we talked for 5 minutes — it was a typical “checking-in” conversation where we shared what we were doing.  All was well.  Then at 12:47pm he called me.  Then again at 12:48 and again at 12:49 when I answered (my phone was in my locker at the gym while I worked out over lunch).  I’m so thankful that I answered within 2 minutes of his first attempt, but am so distressed thinking of him frantically trying to reach me as he we trying to put out the fire on his body.   He calmly told me the house was on fire and he had burned his hands a bit (huge understatement so as not to worry me). Then at 1:37pm, from Don’s phone, the sheriff called me to make sure I wasn’t planning on coming to the house.  She told me it was surrounded by fire trucks and I should go to the hospital to meet Don.  It didn’t occur to me until I saw this phone record, but at 1:37pm, a full 49 minutes after Don called me, he was still at the house (the sheriff did not go with Don to the hospital) and the paramedics had not yet taken him to the Littleton hospital (closest Trauma 1 hospital).  What were they doing that long??  Why didn’t they get him to the hospital sooner?  I know we’ll never know, and it all worked out, but it bothers me.

I remember meeting the helicopter pilot and co-pilot in their Flight for Life jump-suits at Littleton hospital and asking them to fly carefully and take good care of Don.  I worried about the flight because I could comprehend that danger, unlike the terrifying mystery of Don’s burned body, which at the time I chose to believe was quickly fixable.

After seeing Don wheeled out to the helicopter and it take off to the east, Jane and I started driving toward the University of Colorado Hospital (UCH) on 225 and Colfax.  I remember thinking it had been years since I’ve been on 225 because I don’t particularly like that narrow, rutted stretch of highway…the odd thoughts that go through your mind at a time like that.  At 2:13pm I called my Dad in Maine (my Mom was down in Boston for some commitments while my Dad stayed up in Maine) and talked to him for 5 minutes, telling him the little I knew.   Then I called my Mom at 2:18pm.  I couldn’t answer all their good questions and promised to call back when I knew more.

Neither Jane nor I had ever been to UCH so we thought the best thing to do would be to go straight to the ER.  We didn’t notice the Flight for Life helicopter that we must have driven within feet of on our way to the Inpatient building.  In the ER they told us burn patients go directly to the third floor Burn ICU so we found our way to the lobby, the elevator bank, then the third floor “Trauma/Burn ICU”.   We had to call and get buzzed into the Burn ICU, then inside the doors, we each put on a mask and gown to protect the patients from our germs.  As we walked along side the long nurse’s station toward Don’s gurney, I asked the helicopter pilot and co-pilot who were filling out paperwork behind the desk, how the flight went (not sure why I was making small talk – maybe avoiding the diagnosis). Don was out in the hallway next to the nurses’ station, awaiting the doctor’s arrival (in hindsight I’ll bet the doctor was over in the adjoining Outpatient building at the Burn Clinic’s Thursday interdisciplinary clinic appointments).  I told Don “everything will be okay, I promise. I love you and will be right here.” They take new patients into a special exam room equipped with a metal tub and water hoses coming out of the ceiling so they can remove burned tissue and determine the extent of the injuries (the patient is given intravenous painkillers).   I can’t imagine the things these doctors, nurses and burn technicians have seen.

When they took Don back into the exam room, Jane and I were asked to go out to the waiting area outside the locked Burn ICU doors. Don’s daughters arrived and we all waited for the doctor’s diagnosis.

I remember when talking to the doctor that he didn’t seem to be in any hurry as is a common experience with busy, over-booked doctors, but wanted to make sure I felt comfortable with the information he was giving me.  He felt that Don’s injuries were not too bad and that he would eventually make a full recovery (my mind translated this to mean a “quick recovery”.)  His initial estimate was that Don had been burned over only 15% of his body, but cautioned me that burns continue to deepen and “declare themselves” and initial views can be very misleading. He sat and talked to me for at least 20 minutes, making sure I had asked all the questions I had at the time (which weren’t many given how little I knew to ask at the time.)  I did ask if Don was going to make it, which the doctor assured me he would.  I didn’t know at the time that the combination of Don’s age and percentage of burns (which eventually revealed themselves to be 45% of his body) meant he statistically had about a 50% chance of surviving.  I’m really glad I didn’t know that.

Today was a beautiful fall day – sunny and 70 degrees. We had a great bike ride.  Then we went out to a sushi dinner where we talked about the year we’ve been through and about all our years together and how grateful we are for every minute of it.

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Hand surgeon meeting

We met with the hand surgeon today about Don’s pinkies and the contracture on his right palm.  His left pinkie in particular is curled over pretty badly and he can’t come close to straightening it.  His right pinkie isn’t quite as bad.  And the contracture on his right palm prevents him from fully flattening his hand.

Going in to the appointment we were thinking that to get rid of the thick scar tissue on his pinkies and his palm it was just a matter of making an incision and pulling out the scar tissue.  What they really have to do is cut out the entire area, skin and all, fix any ligament and joint damage, then remove skin from another area (the groin is apparently the optimal choice) and sew in the skin graft to the surgical area.  It’s major surgery and requires the patient to keep their operated on limb or other area immobile for 2-3 weeks.  So Don couldn’t have both hands done at once.  Also, the operation(s) mean more heavy-duty anesthesia. And the grafted skin most likely will not match the skin in the surrounding area to which it was applied which can look odd.  There’s also the chance the area operated on will develop new contractures and scarring.   But particularly with the left pinkie, the doctor felt sure he could make the net result better.

Rather than deciding on whether or not to have both hands done (and then there’s the thick scarring on the back of his neck to consider), we’re going to think about it and do some research.  And Don will contact a couple other burn survivors to talk about it.  The doctor recommended that Don only have areas operated on that really impacted his quality of life and functional abilities – otherwise the downsides are not worthwhile.


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Burn Survivors’ meeting

Last week we went to the September SOAR (Survivors Offering Assistance in Recovery) burn survivors’ meeting at the University of Colorado Hospital outpatient building.  The meetings are run by the hospital burn unit’s psychologist and are basically a round-table where burn survivors and their families can share experiences, ask questions, get advice and just listen to others’ struggles.

Burn survivors talk about their burns in terms of the percentage of their body that was burned and the degree of burns they received — Don was burned over 45% of his body with mostly third-degree (“full thickness”) burns and a few areas of second degree with deep partial thickness burns.  Wickipedia does a good job detailing the degrees of burns and other facts:  http://en.wikipedia.org/wiki/Burn.  Don’s legs were third degree and are grafted from butt to ankle on both legs, primarily the backs of the legs but his right leg is also grafted on the shin.  He was very fortunate that his leg burns were not circumferential because when the skin is grafted all the way around an extremity, it can cause many additional problems in recovery – the limb cannot swell and contract properly impacting circulation and nerve recovery.  Don’s right leg had about a half-inch of skin on his shin that had only 2nd degree burns, saving him from a graft covering the entire circumference of his leg.

In last week’s meeting there were 5 burn survivors (including Don), and 4 family members (including me).  One survivor, there with his mom, was probably only about 18 or 19 and he had been burned on his upper body and neck and having a really hard time accepting his injuries and his scars.  His neck was still quite raw – this just happened 2 months ago.  I’m not sure if he couldn’t turn his head or just didn’t want to move his neck and risk breaking up the healing skin.  Either way it was significantly hindering his range of motion.  He was also emotionally having a very difficult time and had to leave the room at one point when Don was answering a question about what it was like in the hospital when family would react to seeing the burn scars for the first time.

When he returned to the room Don told him about J.R. Martinez – the burn survivor currently competing on Dancing with the Stars (DWTS).  Don urged the young man to watch DTWS and see what is possible.  JR was a soldier over in Iraq when his Humvee his a land mine.  He was burned over 40% of his body and has significant scarring on his face.  He is an incredible dancer and a beautiful person inside and out and truly an inspiration.  I am not a dancer, nor am I an avid follower of DWTS….but last night’s performance (Monday, 10/3/11) by JR brought me to tears – he danced to Tim McGraw’s song “If You’re Reading This” which is a song dedicated to the wives of fallen military men.  Check out the dance performance here:   http://latino.foxnews.com/latino/entertainment/2011/10/04/dwts-jr-martinez-cries-pays-tribute-to-military-gets-standing-ovation/.

There was also a family member in the room whose wife was currently in the Burn ICU in a medically induced coma.  She was burned over 80% of her body and her kidneys had shut down and they weren’t sure she’d make it through the night.  (As an aside, burn patients almost always have kidney issues during hospitalization – as strong as Don was going in, he ended up having a brief period of time during hospitalization when he needed insulin because his kidneys weren’t working properly).  This family member was understandably quite distraught at the prospect of losing his wife and wanted to know, if she makes it, what’s next?  That reminded me of myself back in November of last year.  I always make sure I have a solid plan in place to manage things and create an optimal outcome.  But when something like this happens, you just can’t make a long-range plan.  You have to take it one step at a time.  He heard what we were saying but I’m not sure he was ready to accept it.  I wasn’t either back then — I thought I could force the situation and come up with a plan anyway.  I learned differently when the unexpected kept happening, throwing me off course — infections, rashes, pain, house restoration problems for months on end.  But it changed me for the better and taught me that life can be so very rewarding and fulfilling not having a plan for everything.  Not knowing is okay.  It even enabled me to leave my company after 12 years to figure out what I really wanted to do when I grew up.  I’ll let you know when that happens……

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It was great to see everyone in Thursday’s Burn Clinic appointment.  Don’s surgeon wasn’t able to make it but Dr. G (rehab) and Nurse Julie were there.  They really couldn’t believe how great Don’s skin looks now.  We talked about how at three months after the fire he was extremely hypertrophic (from http://www.medterms.com/script/main/art.asp?articlekey=4090 — A scar that doesn’t know when to stop. When the skin is injured, cells grow back to fill in the gap. Somehow, they normally “know” when the scar tissue is level with the skin, at which point the cells stop multiplying. When the cells keep on reproducing, the result is a what is called a overgrown (hypertrophic) scar or a keloid. The result is a keloid — a tough heaped-up scar that rises quite abruptly above the rest of the skin. It is irregularly shaped and tends to enlarge progressively.  In other words, keloids are due to an excessive response to trauma such as a cut to the skin. In creating a normal scar, connective tissue in the skin is repaired by the formation of collagen. This occurs in the dermis (the layer of skin just below the epidermis, the outer layer of skin). Keloids arise when there is too much collagen formed in the dermis during the repair of connective tissue. To develop keloids, a person must be susceptible to keloid formation. This susceptibility is clearly genetic.)

What they found remarkable was the smoothness of Don’s skin (particularly on his legs and hands — his shoulders and back donor site are still hypertrophic/lumpy due to the January/February staph infection).  They both said of all the burn patients they have treated, they have never seen someone heal so well.  Dr. G asked me to email him an outline of the treatment protocol I used on Don’s skin to get these results.  I also want to write a booklet for patients to have when they leave the hospital.  Two things to consider however — each burn is different and each burn patient is different, so what worked on Don may not work for everyone — I don’t know – I only know Don’s results using this methodology.

As we were leaving, Julie told us Don has graduated – this was his last appointment at the Burn Clinic (unless we needed them of course).  They said there was nothing more they could do for us because we were already way ahead of normal progress.  Because I hadn’t considered that today would be graduation day, I didn’t think to ask them how we’ll know when Don can stop wearing the custom compression garments — when are they done benefiting Don’s scars?  But maybe because of the uniqueness of each patient there isn’t an answer to that question.  In researching the topic there is very little information — basically I found that when the erythema (redness of the skin) “begins to abate”, then you stop wearing the compression garments.  But that’s pretty subjective and vague….so if there’s the chance that the garments are still helping, even though erythema has begun to abate, then Don will keep wearing them.

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Burn Clinic on Thursday

Barring any unforeseen conflicts, we have our interdisciplinary burn clinic appointment this Thursday.  We haven’t met with the doctors and nurses that have been with Don from the beginning (almost a year, can you believe it?) since early May.  Pretty amazing that he hasn’t needed any medical attention since then given the enormity of his injuries.

While we were in Maine, three small spots on the grafts on right ankle and one on his left ankle opened up.  They had just a little fluid to them so I applied Bactroban and basic bandages.   After a couple days of that regimen, I let them get some open air to hasten the healing.   After a total of about 4 days they were dried up and basically healed.  But the unsettling thing is we have no idea why these opened up.  Perhaps it was the change to sea level with all that moisture and oxygen.  Perhaps it was the plane trip and the resulting swelling.  I was surprised though because his ankle skin seems pretty thick and tough.  Hopefully ski boots won’t cause friction injuries.  From what I’ve read from other burn survivors, skin opening up is pretty common (some even use Krazy Glue to patch it up!), but Don hadn’t ever experienced so I thought maybe we were immune.  Anyway, the openings were so incredibly small — really just small slits about a quarter of an inch each.  We just don’t want any more infections.

I’ll update everyone after the Thursday Burn Clinic.

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Paper collage

Here’s what I made during our Maine vacation.  Fun project.

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