... I don't feel it's right for me to post about where we are today without posting where we've been for the last six days. And yet, I don't really know how to do this post. There's so many things going through my mind and so many emotions that are being stirred up within me.
On Sunday, July 3rd, ... my mother, my dad's wife, and my children's grandma passed away. To me, it was not entirely sudden and unexpected, but regretful, unsettling and disheartening all the same. I will work towards honoring my mother with a proper post but for now, I am merely just acknowledging and affirming that I am not ignoring what has happened. It is tremendously difficult having to keep moving forward while really just wanting to remain in that space between sleep and awake, where memories live.
Our whole family has been together for the last few days and because Rees' next surgery had already been scheduled for several months, EVERYONE came along to the hospital for the event. It was a LONG day but it was SO NICE to have my dad and my brothers and sisters with us as Rees endured the surgery.
Rees was pretty calm and happy. He did not seem to be anxious at all ... Praise the LORD!
He took the "goofy juice" well ...
... despite it tasting horrible!!
The Pre-Op staff allowed for our family members to come in a couple at a time to be with Rees for a bit before he went into surgery.
The anesthesiologist was nice enough to let Rees look at her phone. Thankfully, he gave it back to her when she asked.
Several on the Plastics Team came in to see Rees and check him over before taking him down to surgery. He did really well with all of this. We found out that there were multiple members of Anesthesia and the OR and Recovery who recognized Rees' name on the schedule and even tried to swap with staff in order to be a part of his OR Team. (no one was willing to switch; they actually fight over him!)
So, the plan for the surgery was to re-section the nasal tumor to remove any residual tumor and then to replace the bone graft that was sitting in-wait on the side of Rees' skull. Additionally, the surgeon would clean up the scar tissue and damaged skin resulting from Rees' previous surgeries.
Below you can see how Rees' bones looked after his first surgery. The nasal bone graft is secure and intact.
After the surgery to remove the bone graft due to all the complications, it was tucked under his scalp on the right side of the skull to save for "later". About a month later, another CT revealed that Rees' bone was disintegrating.
To begin Rees' surgery yesterday, the doctor opened a small section (only about an inch or slightly more) along the former incision so that the bone graft could be removed. Rees began hemorrhaging immediately and he lost over two units of blood, which is ridiculous for the size of the incision that was made. He ended up needing an urgent blood transfusion to replace the blood he lost.
In making the incision along the dorsal nasal segment of Rees' nose, it was quickly discovered that the CSF (cerebral spinal fluid) leak is still occurring as there was fluid everywhere upon opening his tissue, of which has been determined to be of very poor quality. The bone graft literally broke in the surgeon's hands making it non-viable and then he decided to hand-stitch the opening himself, which challenged him because of the spongy nature of the tissue. The surgeon's words were, "I've been trumped on all accords!"
So basically we did not progress and we are unsure of the next steps. Rees stayed in the hospital for two nights as we all watched for negative reactions or further complications. Thankfully, so far, no further complications have occurred.
We will eventually look into what seems to be the potential that Rees has some sort of a collagen disorder and we are also considering genetic testing. At this point, we have been told that there are so many unknowns and uncontrollable variables that Rees may never have a nose.
So, that's it for the moment. He is, of course, a trooper, ... as always ... and he's happy to be back home.
