Tuesday, January 17, 2012

A Ten Day Ride on the Roller Coaster of Hell - Part II

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)

Friday, January 13, 2012

Kennedy's Story as a Duke Family Ambassador

Dear Friends - Our family was chosen to be a family ambassador for the 2012 Duke Children’s Hospital Radiothon! We feel honored to be chosen and are doing all we can to get the word out and keep the donations rolling in! Our goal is to raise $5000 in honor of Team Kennedy. Check out our page and video and consider helping us as we give back to Duke! All donations go directly to help the children of Duke and donations can be made safely through the webpage (we can also accept cash/check donations). Every little bit helps so please, please considering giving to Duke Children’s Hospital and Health Center in honor of our strong, brave girl – Kennedy Grace Goodwin. Our inspiration, our hero.

To donate, or to read and learn more about Kennedy and what Duke means to us, please click here: http://www.helpmakemiracles.org/team/TeamKennedy

And please feel free to pass this onto others – the more we can spread the word, the more we can raise!!

We love you all!
Amy and Kennedy

Tuesday, January 10, 2012

A Ten Day Ride on the Roller Coaster of Hell - Part I

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)