April 22, 2016 - No Graft

After 10 days on the wound VAC I was scheduled to have a skin graft today to fill in the the area where dead tissue was removed. I was put under, but during the procedure it was determined that the tissue is not prepared to accept a graft.  The area in question had to be scraped back down to the bone.  So more waiting...

The dark spot is holding up the progress

They did put in a layer of Integra. The Integra is made of Shark cartilage, so the only highlight of the day is that I am now part ocean predator. The Integra will provide a structure for vessel and cellular growth. It will take 14-21 days before we attempt the graft again.  Additionally, it was brought up today that I may also need tissue expansion before the implant could be reinstalled adding weeks to the process.  Damn.

Staples holding Integra in place, Dark area is sponge for VAC.

I have been very patient and stayed positive throughout this process but today was very frustrating. Ready for life to be back to normal. No vacation when you are not working.

April 12, 2016 -- VAC at home

I was released from the hospital yesterday with my personal VAC.  You can see below it is not very big or heavy, but it is a pain in butt being tethered to this device. Better than being stuck in the hospital tho. The biggest issue with the device so far is at night when it is quiet.  You can hear the sucking/gargling sounds of the machine pulling on your wound from the inside of your head, no escape.  I suggest having something playing in the background as you try to sleep or you will go crazy.  TV and podcasts seem to help.

My bag buddy for the next few weeks

I will go in twice a week to have the VAC cleaned and sponge changed. After 2 weeks we should know how the healing is going and how big a skin graft I will need for the wound to heal properly. The graft will most likely come from my thigh. 

Wound after debidement

April 8, 2016-- Surgery # 5, debridement

Anther week, another surgery.   When you are going through something continuous and unpredictable like DFSP and the associated risks I can't say how important it is to keep a positive sense of humor.  It is easy to start getting pulled into negativity- that will not help.

Just before surgery today

Sign of solidarity from Blanche after my first release

At my appointment with the plastics team yesterday it was determined that a portion of my flap is not going to make it and needed to be removed.  We do not believe it is infection related, but a vascular issue.  When I had the major flap bleed that started this downward spiral it was most likely the vein that feeds this particular part of my new scalp.  That was also compounded by damage from the pressure created by the blood dumped during the bleed.

After surgery today. VAC in place.

The procedure today seemed very routine and went fine.  Believe it or not there is not much pain as I write this only a few hours out of surgery, only a couple Norcos as pain meds instead of the much stronger meds needed after the other procedures.  Unfortunately  I am now hooked to a wound VAC and apparently no one at my insurance can approve taking the vac home until Monday- so I'm spending another weekend in the hole. Don't get me wrong I feel very fortunate to have good health insurance. With out it my life would be in financial ruins and my focus would most likely not be on my recovery. Makes me sad that that is a reality for good people who are unlucky enough to have a major medical event with out it. Damn shame. If you are currently uninsured I would highly suggest getting on a plan because you just never know. I was in very good health before all this went down.

April 5 -- Monitor

I was released from the hospital over the weekend, making 4 surgeries and 17 days spent in the hospital in March. Today is one week after the procedure to have the implant removed. I have two main concerns at this point; if the infection is retreating and the health of the skin flap. We are keeping a watchful eye on any changes on the scalp. Daily photos or photos of anything unusual are really helpful in keeping track.  You will do a lot of second guessing when monitoring your wounds.

Photo of weeping sent to doc

Today's daily portrait also sent to doc

Another thing that has certainly been helpful is the ability to text these pics to the medical team if you have concerns. It is important ask someone in the know if you can communicate with them between appointments. In my case it is the PA who has been very involved in my treatment. It is really helpful to get a quick informed opinion instead of Googling all the bad things it could be.  Yesterday I also became very dizzy on several occasions so I also brought that to her attention as well.

The infection is not so easy to track, I have just been taking my temp and noting any unusual behavior- dizziness, oozing, fever, mental function (lots of jokes in that in know). 

Today we went for a walk for a few blocks and it really wore me out like I had just completed the latest Richard Simmons VHS.  Just a reminder of the work that is ahead to get physically back to normal. Expect to be beat down for awhile but don't stay down.

The Dent