Gosh, I don't even know where to start. Yes - Kevin's surgery went well - for all intents and purposes. He made it through and we had no problems with him handling the trauma.
However, we had been led to believe that Kevin's head would be symmetrical with the other side and I can't stress enough that that did not happen. He is so incredibly disfigured that we are both still reeling from his appearance.
I was lucky, because I had about 30 seconds of seeing what his head looked like before he saw me coming so I had enough time to get over the shock (just barely) and I was able to mask my thoughts. I was also lucky in that I was only allowed a minute or two with him at that point while they wheeled him into ICU and set him up. This gave me the much needed time to recoil in shock and pretty much lose it.
They called me in and I dried my eyes and plastered a smile on and when I got in there Kevin just kept rubbing the area and looking at me like 'what have they done to me?'. I acted like it was no big deal, but I could clearly see that he was just as upset as I was (and he is going by touch - he has yet to SEE it). So I did end up sitting down with him and telling him that yes, it didn't turn out like we thought it would, but that his hair would grow over it and hide most of it.
But I did cry. I cried a lot last night. And Kevin pulled into himself, which is what he does when he is hurting.
You see, not only is his head sunken in about an inch, creating a large indentation, but one ear is almost an inch below the other and it sticks way out. These are things that should have been fixed then during surgery and I felt like we pulled in to a butcher shop and told them to do whatever. I am so seriously disappointed. One, in the doctors' performances and two, in my decision to have the surgery here. I made a HUGE mistake.
So today I did send a pic of Kevin to our Federal Recovery Coordinator, Mary. She will be 'with us' for the rest of our lives to help us along with Kevin's needs (and she is so wonderful!!). So she took the pic and showed the neurosurgeons at BAMC and left me a VM that states that they all agree that they will not allow Kevin to look like this forever. We are going to call in plastic surgeons and see what kind of repair work can be done.
This was the first moment of relief I have felt since I first set eyes on my son yesterday evening.
And I do want to add that I know the important thing is that Kevin came through the surgery just fine, but it still is a shock to see something that should have been fixed look worse than when it went in for the job.
And now I do need to head back up to the hospital. We are still in ICU because Kev does have some fluid on his brain. They are hoping it is just from the surgery and not the continuation of our fluid problem. We will know tomorrow, I guess...
First 2 from the Nov kit!
5 years ago