the scoop

"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

Get updates delivered directly to your in-box

Wednesday, September 2, 2015

Even Less Sugar: You can't keep sewing up a torn tarp.


Thursday morning, Ian will have yet another surgery. This (plastic) surgery procedure is to cover the incision site; currently the opening where the three lines meet on his head has been allowing spinal fluid to leak out and air to leak in, has not healed completely/properly/quickly enough, and is a potential source of infection. WE CAN'T HAVE THAT AGAIN.

So this is the LESS invasive option

They will make a very large, arced incision along the scalp. They will then PICK UP ALL THAT SKIN AND SHIFT IT COUNTER-CLOCKWISE AND PUT IT BACK DOWN. (Think of a secret decoder ring ... turning the top part on its axis). They will then have an open area (the shorted side) where they will graft skin from his THIGH. He will then have donor skin grafted to THAT spot. (I tried to find you some kind of picture or diagram to explain this, but I nearly hurled in the hunting so I stopped. I don't recommend Googling scalp surgery of any kind. Blerg.) *  Skin from his thigh will likely do well in the side opening left by the "scalp shift;" it should attach to that growing stuff and do its thing. 

The reason to do things THIS way is to fully cover the incision site with a sheet of skin already connected to a blood source: ie, the scalp is alive (with the sound of music) and will therefore re-attach and grow normally. (A skin graft over top of the whole site is not an option.) The good news is, the plastic surgeon has done many of these operations before, with good success. They happen often, actually. 

The bad news is that the tissue beneath the wound has been irradiated; it is dead and dying. That's a "good" thing for killing cancer, but a bad thing for wound healing. And the skin itself is delicate and damaged from the now THREE repeated incisions (2006 resection, June's biopsy and July's clean-out). 

As they open him up, they will be able to see the extent of the CSF leak. It's possible they will take muscle from the fascia of his cheek and use that to sew closed where the leak is happening (take a minute to digest the complexity of this stuff. Holy crap).

It's also possible they will need to remove the bone flap they didn't have to remove during the last operation; neurosurgery will make that determination after opening things up. If that occurs, it will make the plastic surgeon's work smoother (literally), but it will also mean Ian will need to wear a helmet for a while to protect the then exposed brain. **

After the surgery we'll know more, in terms of what of the above options were necessary, and what to look for in healing and recovery. There will likely be one or more drains in his head/face, and possibly a shunt. You can probably Google that without losing your lunch. 

He was much better Tuesday than he was Saturday. His tremor was nearly gone at lunch time, but it was back by dinner.  He spilled food all over himself and didn't realize it. He didn't initiate conversation, but he did understand and respond. The only thing he said on his own initiative Tuesday was, "I'm sorry I can't do stuff." But his cognition is better. As per his last CT scan (he gets one every morning), he has less air in the brain. But it's still there ... and I'm hoping it has a lot to do with the tremor and "off" nature. He's not walking well, either -- a heavy lean and very short shuffles. 

He doesn't remember the bowling ball cake. He doesn't remember that the kids were in to see him. He doesn't remember the staff on the floor coming in to sing Happy Birthday. Who knows how aware he really is of this coming surgery, but I'm sure if he were fully aware he'd say, "Sure, go for it. It's just skin," or something equally snarky. 

I miss my Ian. His body is there, but there's this terrible not-there-ness to him that is so hard to take. It was like this in 2011, I keep reminding myself; he relearned to walk and talk and eat. He can overcome this air in the brain thing and move forward.

Tomorrow: forward motion. 

* If this surgery does not "take," there is a more difficult and complex surgery as Plan B. Let's not get to Plan B, okay?

** Basically till he's healed back up, and then an option is to go BACK in and replace the bone piece with a chunk of something synthetic. ANOTHER head surgery with the potential for infection and CSF and air? but also ... no helmet. Anyway, we're not there yet, so let's not worry about Plan A.2, okay?


  1. Dear, dear Rachel. So STRONG. I want to come and hold onto you for a long time. All of the above I could visualize (told you you are a good writer!) and I am amazed at Ian's strength, and the love he must feel for you to be able to maintain HIS strength throughout all this. HE IS STILL ALIVE! God's love and your love is doing that for him! Big time prayer warrior gathering coming right up....and it will be for plan A.2. Will be praying all day today and tomorrow. May God be at His very best (as if He has any other way) at giving orders and may the Great Physician, Jesus Christ, get a really good night's sleep! LOVE you all!