Lucky 13

So once again on Friday, August 12th, one week after surgery, we're up and at the hospital by 6am. Since bandage removal was considered a procedure (as opposed to surgery), we were both allowed to be with her till she drifted off to sleep. What really got me that morning was that Kennedy was just as scared and nervous as she is on the day of a major surgery. And it hit me...I finally understood something she had said to me a couple of surgeries ago, something I didn't want to push at the time. This sweet child isn't nervous about surgery per se. Or even the pain she'll be in after. She's afraid of not waking up.

They say that the drugs used during surgery and to keep patients sedated are memory blockers. I've always doubted this. When Kennedy was five and had to be on life support for nine days, she often came barreling out of sedation bolting upright in her bed. You can't even begin to imagine the amount of sedation drugs necessary to keep a child under. They assured us every time she climbed her way out that it was something she wouldn't remember, that she would have no memories whatsoever. But for more than a year after that horrific month, she would cry out in her sleep saying "Let me wake up! I wanna wake up!" So yeah, she may not have memories of what was going on around her, and she may not remember any of that June, but she definitely had her own nightmares buried in there. Nightmares that still surface when she is about to be put to sleep.

Anywho, back to August 12th. Ryan and I waited out in the waiting room and were joined by Dr. Marcus a short time later. He said that for the most part things looked good, but...there was a black area that he didn't like. The skin graft seemed to not have taken and we needed to watch it closely and were possibly looking at  another skin graft. He hugged me, made an appointment for us to come back in on Monday, and we went back home.

We didn't tell Kennedy but she's perceptive and I think she knew it wasn't good news. Instead of sitting at home and sulking, we headed off to the beach for the day. The beach is my sanctuary, so it was exactly where I needed to be that day.

On Monday, Dr. Marcus unwrapped her head again and said that the black spot actually looked better. Looking at it, if this was better then I can't even imagine what it looked like when he unwrapped it a few days ago. Yikes. Since it seemed to heal some on its own, he decided to see what would happen if we gave it a few more days. So back we went on Thursday. And at that point, he said the words we didn't want to hear. There had been no improvement and in order to save it, he was going to have to do another skin graft. So surgery was scheduled for Monday, August 22nd. Surgery #13.

What I can't explain in words is how we all felt at this point. Kennedy started crying first. Followed by mom. Followed by me. I mean, when does this kid get a freakin' break? Why is life so unfair to her? People often say that it is harder for parents to watch their children go through tragedy than it is for the actual child. I can't say whether that is true or not, I'm not Kennedy and I don't know how it feels to be in her shoes. But I can tell you that it is damn hard to be her parent and watch her go through this journey. She didn't ask to be born, she didn't sign up for this life. She doesn't understand how cruel the world can be or why and that her mom only makes these decisions with her best interest in mind. And no matter what you say to convince me otherwise, she is a kid. How could she possibly understand why life is so unfair sometimes?

Sometimes all you can do is cry. Poor Dr. Marcus and his staff. They have literally seen me cry more than my best friends. I know by this point he must dread having me in his office! I'm pretty sure they restock the exam rooms with tissues on the days we're scheduled to be there.

And so on August 22nd, we're up and at the hospital by 6am. At this point, I've done this three times in the last two and half weeks and I'm over it. As is Kennedy. But sometimes you direct where the journey goes and sometimes the journey directs you where to go. We had no choice, there was no backing out at this point. So, full speed ahead Captain.

Some people think the number 13 is bad luck. I decided to join the other camp...that 13 is lucky. Because at this point, we couldn't possibly take more bad news. So I chose to believe that this Lucky 13 surgery was an omen...it was going to be our break. Surgery went well. He was able to take the skin graft from her head instead of having to move to her thigh or bottom. The head is much, much less painful than other graft sites. Of course, it also meant a loss of a lot of hair. Good thing she has a lot! Adding even more to my omen was that for the first time ever, Kennedy woke up from anesthesia with no tears. She was peaceful. That had to be a good sign, right? I've told you what recovery usually means for Kennedy.

We stayed  overnight just to be cautious and headed back home on Tuesday. This time, he forewent the huge bandage and placed a special ear cup on her ear with a strap that went under her chin. I'd like to say it was more pleasant that the large q'tip. But I can't lie on Kennedy's behalf. And so we were on our own till Thursday the 25th, when he would take his first look at the new skin graft. Oh, how we love the waiting game! And let me just add that yes, August 25th is the first day of school in the state of North Carolina. And this meant that my baby girl was missing the first day of fourth grade. And as much as she tried to say she didn't care, she takes after her dad and can't lie well.

Sitting in the clinic on Thursday, hearing the word PINK (not black!) was the break we were looking for. I've never liked the color pink until that August day. The new skin graft was taking and the ear was looking good. We were given all the supplies we needed for twice daily bandage changes and sent on our way for a whole week this time! And Kennedy was given the clearance to go back to school on Friday, which meant she only missed one day.

Lucky 13 indeed, finally the break that Kennedy deserved. And although we weren't quite ready to celebrate, we did relax a little. For a whole four days...

(NEXT BLOG: A Ten Day Ride on the Roller Coaster of Hell)