One thing that has been so hard about writing this blog is that it is impossible to relay the true emotions we felt during this time. I know no one will ever know but I wish I could do a better job of making those feelings real. You'll also notice that I split this into two parts...I didn't want it to be so long that people gave up on reading it as I think this is a compelling part of Kennedy's journey.
For four whole days, we relaxed. Pink remained our favorite color throughout the weekend. We did twice a day bandage changes and everything appeared to be okay. Kennedy was back at school on Day 2 and settling in. We moved on with normal life and stopped worrying every minute about skin grafts. Lucky 13 seemed to work in our favor.
Then I came home from work on Monday, August 29th. I noticed blood on the shoulder of Kennedy's shirt and there was icky stuff dripping out from under the bandage. And my heart literally sank. I immediately did a bandage change and it was clear as glass that there was an infection spot. I called and left a message for Dr. Marcus, knowing we wouldn't hear back until the following morning. So we carried on as normal...and waited.
Dr. Marcus' nurse called the next morning and said that he wanted to see us ASAP. He was in surgery that day but to be there at 1:30 and he would stop by when he could. Ryan met us at the hospital...and we waited. I mentioned to someone at work that I was dreading this visit not because I wasn't ready for more bad news (I clearly knew the news wasn't going to be good), but because I had an idea that he wasn't going to let us leave and I knew that was going to hit Kennedy hard.
And sure enough, Dr. Marcus took a long look at the ear and turned to us and said, "I can't let you leave." And sure enough, the tears flowed. And flowed. By this point, Kennedy had already had two recent surgeries and spent four nights in the hospital due to this ear. She was frustrated, she was upset, and she was just plain pissed off. I tried to get her to punch Ryan, ensuring her it would feel better, but she refused. :)
So the plan was to walk over to the hospital and start on IV antibiotics. Dr. Marcus took a biopsy of the infected area and placed a call to the infectious disease folks to talk about a course of treatment. We sent Ryan home with a list of must-haves, called grandparents to let them know, and called Katie to bring us food as we had not yet eaten. The roller coaster had left the turnstile.
One of our first major hills to climb was the placement of the IV. Mind you, Kennedy has had lots of IVs but almost all have been placed once she is asleep in the OR. Add to that the fact that my child does not have easy veins to puncture and you get a majorly stressful life event. But after more than 30 minutes and only a few tears, we made it and she was ready. And that's when we learned of the second major hill we were facing: the face-off between Dr. Marcus and the infectious disease (ID) doctors. Little did we know that this was going to be a fight that lasted the whole hospital visit and beyond.
We were visited that first day by a group of about 7 ID docs and residents. They asked us numerous questions, some of them not pleasant. They left making me feel as if I caused this by allowing Kennedy to have contact with our dog or because I let her leave the house (no one told me she was supposed to be in a bubble???). By the time they finally started the IV drugs that evening, there was still no consensus as to what they were treating or how they were going to treat it. They started her on a generically-used IV antibiotic while they continued to try and sort things out. It took lots of back and forth until Friday, three days after admission, when it was determined that Kennedy's infection was a case of drug-resistant MRSA. A superbug. A threat to her ear and to her life.
We were officially quarantined - anyone entering had to wear gowns and masks and Kennedy wasn't supposed to leave the room. Lucky for us, Dr. Marcus and his team were determined to win one battle against the ID folks. They insisted that for her own well-being, she had to leave the room a couple of times everyday. (although this meant that Kennedy now had to wear said gown when she left the room, which she was NOT happy about). No exceptions. This is something that truly hits home for me...in all of this, her doctor was worried about Kennedy as a person. He was looking beyond what all of this meant for her ear, and making sure we were doing what we could to keep her spirits alive.
By this time though, Kennedy was clearly depressed. In all that we've gone through, in all the fights that we have fought, this was the first time that I've ever seen her depressed. She stopped talking . She would sit and stare at the wall for hours. She would refuse the things she loved. She didn't want to leave the room. She crawled inside herself and refused to leave. And I took the brunt of this. When she cried, it was me who she hated through her tears. When she yelled, it was me who was receiving the harsh words. When she was silent the longest, it was me who was on the receiving end of that. If we needed to figure something out, it was no longer me who could get it out of her. I had officially become her punching bag. And I will be 100% honest and tell you that it hurt. It hurt a lot. Deep down I know that I was chosen because I'm the most important person in her life, and that she knew it was safe to take it all out on me because I would love her no matter what. But it still hurt like hell. It also helped my guilt trip along, the guilt trip that I triggered all of this with the decision to proceed with ear reconstruction.
And so I took it. Tuesday, Wednesday, Thursday, Friday. In those four days, she maybe said a total of 100 words to me. And the words she did speak to me were "I need to go to the bathroom." or "Leave me alone." or "I don't care." I'll admit that I'm good at giving the silent treatment. But I suck at being on the receiving end.
Friday night was my night to sleep at home. And I woke up Saturday morning knowing I couldn't face another silent day. So I texted Ryan to give his phone to Kennedy. And I sent her a message asking that if she was going to continuing to be silent with me, to let me know because I love her too much and it hurts too much and I couldn't spend yet another day like that. My reply back was "Please come." And so a truce was called.
Each day started with a 6am visit by Dr. Marcus' team and luckily, Kennedy learned how to sleep through these pokes and prods. I, in my ever-comfy recliner, was not so lucky. By the end of the day, we had seen Dr. Marcus and/or his team at least twice and the ID docs at least twice. And with every visit came something different. Some docs would comment that her ear looks better while others would be in the next visit and comment that it looked no different. After a couple of days this, I quit allowing this game. I told the doctors that it wasn't helping me or Kennedy to hear all the contradicting views. No one but Dr. Marcus was allowed to make official comments on how things were looking. I love his team, and I respect that the ID docs know MRSA, but Dr. Marcus and Dr. Marcus alone knew Kennedy's ear.
One of the hardest things at this point for me is that the swelling was starting to go down and despite the infection spot, it was finally proving to be the ear we were hoping for it. It was cute, it resembled her other ear a lot, and it was perfect. Minus the damn MRSA. By Friday, the framework had started retreating back towards her head, which is not we wanted. That was a hard pill to swallow. So much hope by seeing this cute ear, then watching it disappear in front of our eyes.
By Saturday, we were thanful that we had no Labor Day plans. What a crappy way to spend the holiday weekend. The new ear cartilage had retreated further. Her blood levels required a stop in one of the major antibiotics. The intense drugs had wreaked havoc on her IV site so another IV was required. We had seen 5 different head ID doctors and they each had their own treatment plan and no one could agree. The drugs were keeping the MRSA from entering Kennedy's blood stream but the drugs were not getting to the actual MRSA infection to kill it (due to ear not yet having blood supply). There was discussion of putting a picc line in and sending Kennedy home on IV antibiotics for the unforeseeable future, not an ideal solution. The good news for the day was that Kennedy's best friend came to visit for several hours and Kennedy's spirits were restored. We spent a lot of time playing with Andrea outside that afternoon and I fully give credit to friendship for Kennedy getting back into the fight. Thank God for Andrea (and her mom)!
By Sunday, Dr. Marcus had won the war. Because we had lost so much ground on the ear, and we no longer had quality of the ear, we were going for quality of life. Which meant no picc line and IV antibiotics at home. As of Sunday afternoon, all IVs had been suspended and we had moved to a pretty strong oral antibiotic. At that point, our hope was that the infection continued to clear up, that the black spot had something behind it so when it eventually fell off we didn't have to have surgery to protect the opening (a pointless surgery at that point), and that the cartilage that remained didn't disappear or retreat any further so that she has something that resembles an ear. A quote from me on the Team Kennedy page on this particular Sunday: "I can't put into words how we feel, there just aren't words. I can't tell you what this has done to our resolve, our strength, our spirits, there just aren't words. But Kennedy is stronger than any other person I know and she will soldier on, which means we all will follow behind her."
This was the point where I broke down in the hallway of Duke Children's. I literally just lost it. It isn't that I had not already cried about things. But this was just the end, or so we thought. And after making this journey decision for Kennedy, and knowing that it went so wrong, I just needed to lose it. Eventually, someone summonsed the hospital chaplain, who was determined to make me talk. She obviously had different views than me (I don't think she felt my prayers to Kennedy's guardian angels were enough or directed to the right higher being(s) and she wasn't happy that I wasn't buying into her thoughts) and we were getting nowhere -- I was getting no closer to a discussion about God with her and she was getting no closer to leaving me alone. At the same time, a random lady who I could barely understand decided to stop and pray over me. Geez, those Spanish Catholics have long prayers! Honestly, it was stepping back and looking at this scene as a passerby, knowing that Katie was expected to show up at any time and would walk into said scene, that made me start laughing. I know the Chaplain thought I was losing it at that point, but I was actually recovering. So I picked myself off of the floor and returned to Kennedy's room. Yes, we lost the battle but we weren't going to lose the war.
We ended the weekend hoping for the best case scenario: Kennedy would be home Tuesday and back at school Wednesday. No matter what, she wouldn't have the ear she should be leaving with :(.
(NEXT BLOG: 10 Day Ride, Part 2)
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