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.
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.
Here’s what I made during our Maine vacation. Fun project.
I can’t stop thinking about Dave and his family in the Burn ICU, struggling to understand what just happened to the life they knew and what will they face in the days, weeks, months and years to come. I know the days, weeks and months part, but the years is yet to be revealed.
I would like the goal of this website to be to not only communicate our progress with family and friends, but to use this to take what I wrote on Caring Bridge and turn it into something useful for other burn survivors and their care givers. This site is searchable when in Google and other search engines, so I’m hoping to put enough meaningful content out here that it comes up when searching for information on how to deal with major burns. Or perhaps it could be helpful to other traumatic injury patients too.
So I’ll start working on editing the Caring Bridge content and putting it here — repeat information for those who have been reading all along, but hopefully it’ll serve a good purpose. I also want to write a pamphlet for Burn ICU patients on what to expect when they leave the hospital and what’s next.
Today we read in the Denver Post about a man (Dave) who was in a house fire two weeks ago while painting in the basement. He was burned over 80% of his body and at 50 years of age was given a small chance of survival. Today’s article was hopeful in that he’s still alive, but it really brought us back to 10/21/10. Don immediately thought of the unimaginable terror this man went through when he was on fire and how long it takes just to get past that, let alone think about healing your body.
Dave has been through three surgeries already and is on intravenous antibiotics for an infection. The article mentioned he’s an avid cyclist and has two teenaged sons he cycles with. The three of them even watched part of the recent USA Pro Cycling Challenge. Who knows, maybe we even saw them while we were there. Don wrote to Katie at the University of Colorado Hospital Burn ICU where this man will be for the next 3-4 months offering to come in and talk about his recovery using cycling as a goal and an offer to take his sons out riding.
We’ve been in Sedgwick, Maine for a few days now. It’s amazing how much the oxygen and moisture are helping Don’s skin. Now if I could just get him to get in the ocean……. the water’s 62 degrees so I’m not sure what the problem is……
I have this theory that because cuts heal faster after you’ve exposed them to sea water that Don’s skin will miraculously improve if he takes a swim in the Maine ocean. But I do understand it’s a *bit* chilly. I tried today to get him to go kayaking. Even though I swear my intentions were pure, I was accused of wanting to tip him over into the water… so the excursion was nixed.
Another great thing about being here is seeing family and friends in the neighborhood – they haven’t seen us since before the accident (BTA). My parents haven’t seen Don since he was in the hospital wrapped up like a mummy. When Don showed my Dad his scars he was shocked at how extensive they still were. My perspective is they look so much better than they did, but I understand that to someone who only briefly saw Don’s bare, unbandaged wounds and mostly just saw him covered head to toe in bandages, it’s quite startling to see his bare scars. This was indeed a huge, traumatic, life-changing injury that takes years to heal. This is of course our first experience with such a long marathon of healing. I believe it’s crucial to the healing process to not only maintain a positive attitude and to visualize positive outcomes, but to maintain realistic healing timeframe expectations so as not to be constantly looking for improvements and feeling disappointed. I learned this in the ICU scrub room actually. When I saw Don’s wounds about 2 weeks into the hospital stay, I was horrified — traumatized really. The burn tech corrected me, saying “Oh no, this is GREAT! Look! He’s almost totally healed – look at this area,” pointing to an area on his leg that was less bloody looking and had what I thought was the faintest evidence of a the skin grafts “taking” and starting to grow new skin buds in the meshed spaces. So it’s all relative. Don has a complete and unbroken envelope of skin covering his body and that’s huge progress. Now we work, through twice daily lotion and massage, on making that skin smoother, paler, more pliable, less ridged and bumpy.
Ending on a more positive note, Don’s face has healed wonderfully and I think he looks 10 years younger than BTA. He always says it’s the world’s most expensive and traumatic facials.
For burn survivors and their caregivers and anyone dealing with tragedy or just wanting to live a healthier, more positive life, this site will provide useful information.
All the best,