Sometimes, it is all too much. Have you ever gone on vacation and eaten every meal in a different restaurant? And when you got home, you couldn't even think about eating in a restaurant for awhile? That the the thought of having to pick one that sounded good, drive there, pick something off the menu...it was all just too much?
That's where I am with Kennedy's journey. I don't know exactly what the trigger was, but I've hit the proverbial wall. In the last few weeks, I have cancelled orthodontic appointments to get some gear in place, an allergy testing appointment, a GI follow-up appointment, and a consultation appointment for having teeth pulled. Not to mention that we're supposed to be talking to folks about a prosthetic ear. But I can't even fathom at this point picking up the phone and rescheduling.
And if that makes me a bad mom, for not getting my child the care that others thinks she needs, then so be it. Because frankly, I think she needs a break too. Each appointment takes something out of her and I hate to watch it. She has to psyche herself up for days before going to any appointment, she stoically gets through them, then she doesn't want to think about it again. If things are discussed during an appointment that she doesn't want to hear about (possible surgery, allergy testing, shots, new medications), she totally tunes it all out. And getting her to open up about what's on the medical horizon gets harder and harder the older she gets.
And I'm just tired of it all.
Kennedy once made the comment to me that she was glad she didn't have something like cancer, where she would have to go to the doctor all the time until it was gone (and don't get me wrong, I'm glad of this too). But what she doesn't realize is that she is doing the same thing on a much wider scale (many more specialists) and hers will continue for the rest of her childhood and beyond. She will always have to stay on top of her GI issues. And her immune issues. And her scoliosis/kyphosis issues. And her hearing issues. And her vision issues. And her dental issues. And the myriad of other issues that go hand and hand with Goldenhar.
My whole point is to say that it is okay to hit the wall. It is okay to let the wall stop you momentarily. It is okay to be tired of it all. It is okay to take a break. Because if you've reached that point, then the only way to continue on is to take that break. It is a way to renew your strength. It is a way to focus on the necessary. It is a way to make yourself whole again. And let me tell you, it took me a long time to realize that this is all okay.
We've been through a lot in the past nine or so months. And maybe that is the trigger for my hitting the wall. No matter, I'm thankful that we're finally at a point where I can let the wall stop me momentarily. I'm thankful there isn't anything serious that we need to deal with in the here and now. We still have a long way to go - prosthetic ear, smile surgery, loads of orthodontic work, painful jaw surgeries, spinal fusions, neck surgeries. But for now, I'm going to lean against this wall and take a break from it all and let Kennedy be a kid. Soon enough we will pick ourselves up and climb over that wall and continue on with our journey.
(NEXT BLOG: Surprise Guest Writer!)
Thursday, April 19, 2012
Thursday, March 15, 2012
Here we go again...
Twas the night before surgery and all through the house, not a creature was stirring...except this Mama Bear.
Once again, I find myself on the eve of surgery. One would think this would get easier. I mean, this is the 15th time I've been here. But honestly, it only gets harder.
If I think back far enough, I can vaguely recall the eve of her first surgery, seven long years ago. She was two and had to have a lot of dental work done due to no enamel on her baby teeth. Because she was only two, the dentist insisted on doing it all at once under general anesthesia. Although a lot of work, "simple" dental surgery was how it was referred. Little did we know that simple didn't exist in Kennedy's world.
We weren't worried so much. Sleep came easy that night for all of us. And that was probably the last eve before surgery that I actually slept. The nightmare started with trying to get her calmed down enough to take the calming Versed. Then watching her be put to sleep. Then fighting with the dentist as she wanted to do more and more as precautionary measures. Then watching as Kennedy woke up. Then waiting to try and get her stabilized. At one point, I sat down in the hallway and just lost it. Due to the idiotic rules, only one parent was allowed in recovery at a time (did I ever mention that my daughter will never have surgery at UNC hospitals again? this is only one of many, many reasons), which meant you were either watching her struggle to breathe or waiting in the hallway not knowing what was going on...neither was fun. They finally stabilized her enough to send her home, only for us to rush back to the ER the next day with a partially collapsed lung. Yeah, simple just doesn't exist in Kennedy's world.
That surgery nightmare gave us a little glimpse of what future surgeries would be like. So when she had her second surgery at age 5, we were ready. Or so we thought. Our parents learned not to wait at home for the all clear phone call, being there is where they needed to be for their own peace of mind. So we filled the waiting room (and continue to do so for every surgery). I prepared Kennedy as best I could, leaving out the part that she would be in a medically-induced coma for three days to avoid the worst pain (telling a 5 year old that they wouldn't wake up for 3 days...I didn't think that was a great idea). I didn't sleep the night before, my mind in overdrive thinking it all through. She needed this surgery to save her life, this I knew. But in the end, this is the surgery where we learned that intubating her was extremely difficult due to her airway anomalies, and that extubating her could prove to be fatal. Luckily we were in a great hospital with a great PICU doctor and they saved my baby. Six more days of life support and medical coma - a lot to survive. But we did.
This is also the surgery where I learned that my time spent sleeping in a hospital could increase dramatically so always be prepared. I finally left the hospital on Day 7, and only because someone convinced me that I needed puppy love. I celebrated my birthday that year in a hospital room. What was supposed to be one surgery and a 5-day hospital stay turned into three surgeries and 23 days...so ultimately I learned to never expect the best case scenario. I can hope for it, but I should always prepare for the worst. And never expect simple.
Then surgery #5 came not even a year after the last fiasco. Again, due to her severe sleep apnea this was another life-saving surgery. Sleep the night before? Ha! Watching Kennedy die was still fresh in my mind (little did I know that those 10 minutes would forever be seared so deep in my memory). Not to mention, we were heading back to UNC hospitals and I was starting to have second thoughts on having surgery there. A "simple" T&A. That damn word again. Thousands of kids get their tonsils out every week and they are home the same day. Leave it to mine to end up on life support for a week, with a collapsed lung and a strep pneumonia infection and two years of constant sinus infections due to it all. I blame all of this on the hospital 100%, but still...no simple here.
Not to mention the other surgeries where intubation/extubation have been difficult, breathing rates have been hard to keep at 100% following surgery, and infections have been rampant...this is where I'm coming from tonight. About four surgeries ago, I gave up even trying to sleep. I read, I watch boring TV, I facebook. And now, I blog.
And tonight I HATE. Yes, it is a strong word but it is the only word that truly describes how I feel on these surgery eves. I hate this syndrome that Kennedy was born with. I hate that Kennedy has to go through this. I hate to make these damn decisions, whether it is life-saving or for quality of life. I hate watching her go through all this. I hate waiting for them to take her back to the OR. I hate having to tell her goodbye while tears are streaming down her cheeks. I hate waiting to hear that she was successfully intubated without a stop in oxygen. I hate waiting in the waiting rooms with others who aren't always respectful of others who are waiting. I hate when they are trying to extubate her. I hate watching her wake up out of anesthesia. I hate all the pain meds that have to be pumped into her as her tolerance to them is high. I hate the allergic reactions that come quickly and then reappear with a vengeance several days later. I hate the night after surgery when sleep is hard for her. I hate hospitals. I hate watching her oxygen for hours, hoping and willing it to stay in the high 90s. I hate the stress that comes with all this. I hate that she has to be so damn strong when she's only little. I hate that I have to lose focus on my other child to get this one through it all. I hate the nightmares that these surgeries bring to Kennedy's nights. I hate that this has to be Kennedy's life. I hate, I hate, I hate.
But through it all, I love. I love that my child is alive due to modern medical technology. I love that we are surrounded by great hospitals and medical care. I love that we have found awesome doctors who care about Kennedy as a person, as a child. I love that we are able to afford the medical care she needs. I love that our families rally and are here for us. I love that my friends never let me down. I love that people pull through and show Kennedy love and support in her darkest hours. I love that I am Kennedy's mom and can help her through all of this while trying to make the rest of her life the best it can be.
There is no comfort to be found tonight. There is no peace to be had. There is no silver lining at this moment. There is no sleep that will come. Those will come tomorrow once surgery is over and we are home. Because truly, my life is good and I am blessed. But for me, this is my night and mine alone (except I'm sharing with you so maybe this isn't entirely accurate). To hate the world. To ask "why me?" and "why Kennedy?" To wonder and wish for better things to come. To play back this journey on rewind and watch it again, making myself remember and revisit things that I don't want to. Because if I have to watch my baby in pain tomorrow, then I only deserve to be in pain myself.
And as always, prayers, well wishes, good thoughts, and positive energy are welcomed. Not sure if it takes a village to raise this child but it takes a village to get me through it.
(NEXT BLOG: I'll surprise you. Not sure yet where to take you next.)
Once again, I find myself on the eve of surgery. One would think this would get easier. I mean, this is the 15th time I've been here. But honestly, it only gets harder.
If I think back far enough, I can vaguely recall the eve of her first surgery, seven long years ago. She was two and had to have a lot of dental work done due to no enamel on her baby teeth. Because she was only two, the dentist insisted on doing it all at once under general anesthesia. Although a lot of work, "simple" dental surgery was how it was referred. Little did we know that simple didn't exist in Kennedy's world.
We weren't worried so much. Sleep came easy that night for all of us. And that was probably the last eve before surgery that I actually slept. The nightmare started with trying to get her calmed down enough to take the calming Versed. Then watching her be put to sleep. Then fighting with the dentist as she wanted to do more and more as precautionary measures. Then watching as Kennedy woke up. Then waiting to try and get her stabilized. At one point, I sat down in the hallway and just lost it. Due to the idiotic rules, only one parent was allowed in recovery at a time (did I ever mention that my daughter will never have surgery at UNC hospitals again? this is only one of many, many reasons), which meant you were either watching her struggle to breathe or waiting in the hallway not knowing what was going on...neither was fun. They finally stabilized her enough to send her home, only for us to rush back to the ER the next day with a partially collapsed lung. Yeah, simple just doesn't exist in Kennedy's world.
That surgery nightmare gave us a little glimpse of what future surgeries would be like. So when she had her second surgery at age 5, we were ready. Or so we thought. Our parents learned not to wait at home for the all clear phone call, being there is where they needed to be for their own peace of mind. So we filled the waiting room (and continue to do so for every surgery). I prepared Kennedy as best I could, leaving out the part that she would be in a medically-induced coma for three days to avoid the worst pain (telling a 5 year old that they wouldn't wake up for 3 days...I didn't think that was a great idea). I didn't sleep the night before, my mind in overdrive thinking it all through. She needed this surgery to save her life, this I knew. But in the end, this is the surgery where we learned that intubating her was extremely difficult due to her airway anomalies, and that extubating her could prove to be fatal. Luckily we were in a great hospital with a great PICU doctor and they saved my baby. Six more days of life support and medical coma - a lot to survive. But we did.
This is also the surgery where I learned that my time spent sleeping in a hospital could increase dramatically so always be prepared. I finally left the hospital on Day 7, and only because someone convinced me that I needed puppy love. I celebrated my birthday that year in a hospital room. What was supposed to be one surgery and a 5-day hospital stay turned into three surgeries and 23 days...so ultimately I learned to never expect the best case scenario. I can hope for it, but I should always prepare for the worst. And never expect simple.
Then surgery #5 came not even a year after the last fiasco. Again, due to her severe sleep apnea this was another life-saving surgery. Sleep the night before? Ha! Watching Kennedy die was still fresh in my mind (little did I know that those 10 minutes would forever be seared so deep in my memory). Not to mention, we were heading back to UNC hospitals and I was starting to have second thoughts on having surgery there. A "simple" T&A. That damn word again. Thousands of kids get their tonsils out every week and they are home the same day. Leave it to mine to end up on life support for a week, with a collapsed lung and a strep pneumonia infection and two years of constant sinus infections due to it all. I blame all of this on the hospital 100%, but still...no simple here.
Not to mention the other surgeries where intubation/extubation have been difficult, breathing rates have been hard to keep at 100% following surgery, and infections have been rampant...this is where I'm coming from tonight. About four surgeries ago, I gave up even trying to sleep. I read, I watch boring TV, I facebook. And now, I blog.
And tonight I HATE. Yes, it is a strong word but it is the only word that truly describes how I feel on these surgery eves. I hate this syndrome that Kennedy was born with. I hate that Kennedy has to go through this. I hate to make these damn decisions, whether it is life-saving or for quality of life. I hate watching her go through all this. I hate waiting for them to take her back to the OR. I hate having to tell her goodbye while tears are streaming down her cheeks. I hate waiting to hear that she was successfully intubated without a stop in oxygen. I hate waiting in the waiting rooms with others who aren't always respectful of others who are waiting. I hate when they are trying to extubate her. I hate watching her wake up out of anesthesia. I hate all the pain meds that have to be pumped into her as her tolerance to them is high. I hate the allergic reactions that come quickly and then reappear with a vengeance several days later. I hate the night after surgery when sleep is hard for her. I hate hospitals. I hate watching her oxygen for hours, hoping and willing it to stay in the high 90s. I hate the stress that comes with all this. I hate that she has to be so damn strong when she's only little. I hate that I have to lose focus on my other child to get this one through it all. I hate the nightmares that these surgeries bring to Kennedy's nights. I hate that this has to be Kennedy's life. I hate, I hate, I hate.
But through it all, I love. I love that my child is alive due to modern medical technology. I love that we are surrounded by great hospitals and medical care. I love that we have found awesome doctors who care about Kennedy as a person, as a child. I love that we are able to afford the medical care she needs. I love that our families rally and are here for us. I love that my friends never let me down. I love that people pull through and show Kennedy love and support in her darkest hours. I love that I am Kennedy's mom and can help her through all of this while trying to make the rest of her life the best it can be.
There is no comfort to be found tonight. There is no peace to be had. There is no silver lining at this moment. There is no sleep that will come. Those will come tomorrow once surgery is over and we are home. Because truly, my life is good and I am blessed. But for me, this is my night and mine alone (except I'm sharing with you so maybe this isn't entirely accurate). To hate the world. To ask "why me?" and "why Kennedy?" To wonder and wish for better things to come. To play back this journey on rewind and watch it again, making myself remember and revisit things that I don't want to. Because if I have to watch my baby in pain tomorrow, then I only deserve to be in pain myself.
And as always, prayers, well wishes, good thoughts, and positive energy are welcomed. Not sure if it takes a village to raise this child but it takes a village to get me through it.
(NEXT BLOG: I'll surprise you. Not sure yet where to take you next.)
Friday, February 24, 2012
Coping: It's Just Something Ya Gotta Do
cope
1 verb1. to struggle or deal, especially on fairly even terms or with some degree of success
2. to face and deal with responsibilities, problems, or difficulties, especially successfully or in a calm or adequate manner
Someone recently told me that they are having a hard time coping with all that their child has been going through and asked how I cope with our journey. So I thought, great blog idea. Easier said than done, let me tell ya. I've tried for weeks to sit down and write this. But coping...it is truly a personal topic for me. Do I really want to share that much of myself? Do people really care?
But here I am. And although I'm probably going to hold back a little, my hope is that by sharing what I do, others can somehow take from that. Even if it is to say that she copes all wrong and I don't want to be like her :). Because in the end, when you have a child with special needs, you're going to need to cope. A lot.
In my world, there is coping on two different levels: acute coping (in the moment during surgery scheduling, surgeries, hospital stays, etc.) and chronic coping (the everyday worries and issues related to Kennedy's journey). I used to think that the acute coping was the worst, how could it get any worse. But the more we journey on, the more I think that the chronic coping is what's going to stress me to death.
We all cope. I mean, what's the alternative? But what I've learned, even within just my own household, is that we all cope differently. I usually keep everything inside, letting it build up, till the tears start flowing and I can't hold them any longer. One of my best friends recently posted that she does her best thinking in the shower. Well, I do my best crying in the shower. And I'll admit, I do it on a regular basis. I think it goes back to several posts ago with the picture saying that we cry because we've been strong for too long. I am strong every damn day in this journey of Kennedy's. But my strength can only take ME so far. And unless I refuel, I can't continue to be strong for her. So I take a shower, and I cry. And cry. And cry some more. Then I find the silver lining in the current situation and I journey on. Just remember...don't be afraid to cry.
And then I read. A lot. My husband often compares my reading to his iPhone addiction. I've been made fun of because I prefer murders or other fictional mysteries instead of non-fiction or reality books. But here's the thing: I read to lose myself in the book. I face reality everyday, I need something else to help escape it. If I'm rooting for the victim to outrun the serial killer, then I'm not thinking about the surgery appointment I need to schedule for Kennedy. Find something to lose yourself in, even for short periods of time.
My faith has surely changed since Kennedy was born and continues to change as we continue on this journey. I'm a very firm believer that what I choose to believe or not to believe is my personal choice to make and I won't share. But the constant of my faith has always been praying to Kennedy's guardian angels. Her angels have certainly pulled her through some pretty rough patches and I strongly believe that my grandmother was leading the way. In fact, Kennedy once said that she knows that Nonny is her guardian angel...because she saw her in the OR. Kennedy is surrounded by people she loves here on earth, and I know that her guardian angels are always watching over her. That makes coping just a little bit easier. Find faith in something, anything, so that you can draw upon it when you need it.
This blog has been cathartic for me, no matter how tough reliving some of this journey has been. To step back and think it through, to share with others, to learn that something I've said has touched or inspired someone...it really does warm my heart and helps me know I'm doing the right thing. Even if it helps only one person, I've made a difference to someone. Share your story, people really do care and they can take something away from it to help them in their own lives.
To deal with chronic coping, I've learned that whenever I have a chance, I need to get out and go. I've heard all the comments about how many trips and vacations we take, how can we afford it, we're spoiling our kids, etc. First of all, I've watched my child die (and thankfully brought back to life) and I know how precious life is. It can be taken away at any time so make memories when I can. Second, and probably more important, is that when you deal with everyday stress (hearing issues, speech issues, severe chronic constipation, chronic sinus issues, and on and on), you never get a break from it unless you make a break from it. And that folks, is why you'll always find me planning our next trip. I need it, Kennedy needs it, we all need it. Find a happy place, no matter where or what it is, and go there as often as possible.
One of the hardest things that I've learned in exploring coping mechanisms is that I have to be ready and willing to call on friends and family. This is where you learn who your true friends are. Because they will do anything for you and do it without expecting anything in return (of course, I try to pay people back as much as I can but there are some things that I honestly will never be able to pay back -- that's how awesome my friends and family are). It isn't easy for me to rely on others but I need them if I'm going to cope. If I'm going to get through something, I know I can't do it by myself. I need to be surrounded by those who love me. Surround yourself with positive people you love and who love you, build an awesome support system.
What I've realized in the last few years is that above all else, I have to take care of myself. I've realized that stress and constant coping can kill you if you aren't careful. It seems that I keep adding to my arsenal of prescriptions and all ailments can be triggered or made worse by stress. The first time I met with my cardiologist he told me I needed to remove the stress from my life and I asked if he was in the market to adopt a 7 year old child. He told me that my answer was the reason he no longer says that to his patients (see, I made another difference in someone's life! :) We all have stress, no matter what it is. Between the chronic and acute coping in my life over the past 10 years, my health has taken a beating. Luckily, I realized this before it was too late. But probably lost some ground in putting myself last for so long. Take care of yourself first...who will take care of your special needs child (or whatever you are coping with) if you aren't around?
And most importantly, I draw strength from Kennedy. Katie is the light in my world and Kennedy is my strength. For those who know her, have you ever met a stronger person? To cope, look to the one or the thing that is making coping necessary. Chances are, that's where you'll find your strength. Its where I find mine.
Refer back to definition of coping above...the key word in the definition is "success." We all cope, it's just something ya gotta do. And we all cope differently, whatever works for you. But coping successfully takes patience, love, support, strength, and faith. I don't know that I always cope in the right way, but I continue to survive. So I must be doing something right.
(NEXT BLOG: Here we go again...)
Sunday, February 5, 2012
A Sister's Perspective
This blog post was written by Kennedy's big sister, Katie. When it comes to sisters, I think Kennedy really lucked out...
When I was eight years old, my little sister, Kennedy, was born. My family was all so overjoyed that we hardly noticed that her appearance wasn’t completely normal. Kennedy was born without her right ear due to Goldenhar Syndrome, a congenital craniofacial disorder. Little did we know that it wouldn’t be an easy fix, and that there were going to be many other medical issues that went along with it.
Adjusting to life with a sibling with medical problems was a challenge, and it still is. However, it has taught me that others come first and to not take any day or any thing for granted. Sure, we fight, we argue, we annoy each other; we’re normal sisters. But what makes us different is that we’ve both gone through the hard times.
The hardest for me was the first ear surgery in October 2010. Having to leave the hospital before the surgery was done to go be in my school’s parade as well as not having my mom be there to see me on Homecoming court was really tough. But I think of my end of it and I realize that I don’t have anything to complain about.
I would do anything for Kennedy; she is an amazing little kid. Having seen firsthand her struggles over the years, I know it’s not something I could go through. For that she is a hero-my hero. I am so grateful to have her as my sister. She has taught me a lot of life lessons that I’ll never forget. I love her and I cannot wait to see what the future has in store for our relationship.
(NEXT BLOG: Coping: It's Just Something Ya Gotta Do)
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)
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)
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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