When we left off, we were ending the weekend hoping for the best case scenario: home by Tuesday, back at school by Wednesday. We were ready to be home, no matter what ear we were leaving with, and this was promising. We were "surprised" when my parents showed up Sunday night, ready to fill in where needed. I had been keeping them at bay as my mom had literally just left after being here for more than two weeks and they were preparing to leave on an international trip. However, when I called home early Sunday afternoon, and then again a couple of hours later, with no results...I knew they were on their way. And sure enough, they showed up just in time to dine in their favorite restaurant, the Duke Hospital Cafeteria.
We spent the holiday Monday trying to keep Kennedy distracted. Distracted by the bad news of her ear not cooperating, and from the anticipation of going home. With my parents now there as reinforcements, Ryan's mom headed home...she had been on hospital duty since Wednesday (which I forgot to mention in Part I, was Ryan's birthday...we celebrated with a pizza and cake party in the room!). Andrea, Brad and Megan all came and spent several hours with Kennedy. We claimed a corner of the cafeteria and spread out with games, crafts, and of course ice cream. The amount of ice cream we ate from the cafeteria was excessive by this point!
Things were no better with Kennedy's ear on Monday evening and we were literally just playing a waiting game to go home at that point. We played a lot of cards that evening, again trying to distract and waste the hours away. We started sending things home with my parents that night...you can't imagine how much we accumulate doing a week plus hospital stay. Things from home, things friends leave to help occupy time, things for Ryan and I, homework and school books, gifts and balloons from visitors and other. The piles never end.
Then. Came. Tuesday. My dad left bright and early to head back to Ohio. Mom was staying to help with Kennedy and to help get our lives back to normal. My mom stayed home instead of coming to the hospital since we were coming home. And since mom didn't need a ride over, and since I would be coming home soon (our usual rule is that if we stay all night, we get to go home and rest or shower or whatever in the morning while the other steps in), Ryan went on to work.
At the 5am wake-up, Dr. Marcus' team thought she would be going home. Yay! But then Dr. Marcus came. And after looking at her ear, and realizing that the oral antibiotics were doing absolutely nothing (another battle with the ID docs!), he strongly suggested that we have one more surgery....to remove the ear, to remove the MRSA infection. This was hard to hear. We knew the ear wasn't what we wanted. But it was something. We had something to show for all the pain and suffering that we had been through. And when I say we, I mostly mean Kennedy.
Even harder for me as a parent was what I did next. And that was to explain to Kennedy and tell her that it had to be her decision. No parent wants to put this type of pressure on their nine year old child, let me tell ya. It broke my heart to do it. But I couldn't make it for her. I had made the decision of what her face should look like (again, something no mother should have to!). Kennedy had now gone through three surgeries and yet another failed ear. Kennedy was in this for the long haul. This was her ear. This was her body. And ultimately, this was her decision. Now don't get me wrong, as a social researcher I know ways to bias one's answer. And perhaps I was a little guilty of this. But I needed her to make the final decision. And through her tears, she said "I'm done."
Now if you think this was a heartbreaking scene, which it was and I felt REALLY sorry for the young resident who happened upon it, it was about to get worse. Dr. Marcus said that if we decided surgery removal, it needed to be on Wednesday. Let me tell you about Wednesday...
The Carolina Hurricanes had conducted a competition at Leesville Elementary the previous school year. The kids were challenged to read as many pages as they could for six weeks and the top readers would get an awesome prize. Kennedy read several thousand pages and then we kind of forgot about it. But in the couple of days that she was back at school, she learned that she was one of the top seven readers in the school. With a prize of being in a PSA about reading with Hurricane Brandon Sutter. And that PSA video was being filmed on...you guessed it, that Wednesday.
Suddenly, surgery wasn't so bad. But missing the Hurricane video chance? End. Of. The. World. If I thought my heart broke before, this time it shattered. I mean, I expected her to be upset. But she was deflated. She was devastated. She was crushed into a million pieces. It was a hard afternoon and I'm glad it ended up just being the two of us.
So, remember when I said my dad had left that morning since Kennedy was coming home? I'm sitting at home that evening and my mom tries to call him with no luck. She tried a little later. And about 10pm, someone knocks on the door and once again, we were "surprised" by my dad with his suitcase. He drove 7 hours home, learned of the surgery, cancelled all his golf games, and drove 7 hours back. This is why I love him.
And so Wednesday comes. Dr. Marcus did not have an OR that day so he was at the mercy of other doctors so surgery time was hit and miss. My parents missed kissing Kennedy good luck by 5 minutes. I dressed up in my bunny suit (trust me, you don't want to know) and I headed into the OR with Kennedy. I stayed with her till she was asleep and kissed her baby eye, about the same time that she should have been filming a video with Brandon Sutter.
Dr. Marcus asked me to step out in the hall with him. He asked if I was okay. He handed me paperwork about the prosthetic team who make numerous body parts from silicone, including ears. He told me that he asked one of these team members to stop by our room that night, saying he couldn't let us leave without hope. And he hugged me. And I don't mean just an awkward little pat type hug. He hugged me. He made sure I was okay. Then he went to operate on my baby. And this is why I love him.
Surgery went well, he was able to get all of the MRSA. Good news because that meant only the normal post-op antibiotics instead of the heavy-duty stuff. Do you know what 10 days of intense, extreme, heavy-dose antibiotics can do to one's GI tract? Well, it isn't pretty. Four months later, we're still dealing with it on a daily basis.
Back in the room that evening, the prosthetic artist (I know this isn't his technical title but close enough) stopped by after a long day at his job. He brought pamphlets, pictures, example ears, information, HOPE. Kennedy wouldn't look at anything or touch anything but you could tell she was listening to every word he said. And this guy was awesome, unlike the other prosthetic artist that we met at that other hospital. Just his willingness to come talk to us, his trying to pull Kennedy into the conversation...it meant a lot to me.
Thursday came and with it the news we had been waiting 10 days to here: "You're going home." And so we went. And on the way home, I heard from the backseat, "Ya know what, Mom? Those ears that guy brought last night were pretty cool, weren't they?" And my baby girl soldiers on...
Again, I know I can't possibly get my emotions to come across like I want. And I'm sure as I reread this, I will realize details I forgot. The bottom line is, those were ten days spent in hell. But we survived. And we left with hope. And Dr. Marcus' promise that he will never give up on Kennedy.
(NEXT BLOG: A Sister's Perspective)
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