“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” (Khalil Gibran)
I first heard this quote on the tv show, Criminal Minds, several years ago and it has stuck with me ever since. I'm not sure I could come up with a better quote to describe the life Kennedy has led thus far: With all of her suffering, she is truly the strongest soul that I know; And her character, which many perceive as massive, is seared with physical, emotional, and mental scars.
It wouldn't be fair to share our journey for an ear, if we didn't include all the road bumps we endured to get there (and I will apologize now as this might be a long blog post). See, having a craniofacial syndrome is similar to always waiting for the other shoe to drop. There are, of course, the obvious physical differences that one can see from the beginning. Then there are the things that are found through the numerous tests that are required. But even then, you don't know what you're dealing with. Because at anytime, you can get a piece of news that will floor you. Just when you thought you knew the battle you were fighting, the battle changes.
Within an hour of birth, we had a diagnosis. And we were given a flash training on what the diagnosis definitely meant for Kennedy and what it might mean in the near or distant future. But nothing can prepare you for all that you will go through.
Before leaving the hospital, we learned that she was deaf in the affected ear, that she only had one kidney, that she had trouble swallowing due to facial paralysis, that torticollis affected her neck muscles, and that her sinuses were extremely small for a full-term baby. At six weeks old, we were in the cardiologist's office having a full heart check-up. With hemifacial microsomia, heart problems are not rare. Luckily, for us, we received the good news that her heart seemed to escape the syndrome. At six months old, we had a physical therapist coming over to perform neck exercises twice a week. With a screaming baby. Yeah, that lasted long. For the first two years, we made bi-monthly trips to the development center to assess whether she was developing on track. For all the stress that caused, they should see her now!
At age 2.5, Kennedy underwent her first surgery at UNC. She was born with no enamel on her baby teeth and she had a host of dental problems. The dentist decided to do everything in one surgery and I was too new to all of this to disagree. She had numerous crowns placed, teeth pulled, root canals. I did put my foot down in the middle of surgery when the dentist wanted to pull all of her front teeth out as a precaution. Being her first surgery, we had no idea that it would turn into such an ordeal. After surgery, she was having trouble breathing. Only one of us was allowed with her in recovery and I took a break to call grandparents. I just remember breaking down in the hallway, the first time I realized how fragile her life could be. We eventually went home that night only to rush back to the ER the next afternoon with a partially collapsed lung and doctors who were in disbelief that 1) someone did that much dental work on a 2 year old in one surgery and 2) that UNC let her go home the night before. Had I been wise enough then, that would have been the last surgery at UNC. I will say that in order not to make a scene, I've never taken Kennedy to another dental appointment. That dentist, although she doesn't realize it, is lucky that Ryan is so laid-back.
Soon after came the three year old appointment which found a major vision deficit in her right eye and scoliosis/kyphosis in her back. Two major blows in one visit. Around this same time, we knew for sure that she wasn't hearing us well, so at age 3 Kennedy received her first hearing aid in her "good" ear. Make that three major blows. That was a huge adjustment for her, but also a huge help. At the eye doctor, we learned that the eye on her syndrome side has never learned to focus. Her other eye was overcompensating though so we never had a clue. We tried patching and a contact and to this day, it still isn't much better. Hopefully there is a fix for this one day in the future of medicine. In the meantime, we pray that nothing happens to her "good" eye. So I am the parent always yelling about things where a child could get their eye poked. Because if it is my child, then she has to lead a blind life and I cannot imagine that path.
We then visited with the orthopedic surgeon from her torticollis days and the bad news just kept coming. Not only did she have progressed scoliosis and kyphosis, but one side of her chest wall was not growing properly. And as we debated and discussed our options, her heart and lung were being squeezed. She fought pneumonia after pneumonia battle. She had no energy and was losing her spirit. We finally decided that she would be the first person in the state to receive the fairly new VEPTR, a titanium rib, to help with both the scoliosis and the rib cage. One would run the length of her spine, the other attach from top to bottom ribs and be expanded on a regular basis to stretch her rib cage. I won't go into all the details but the highlights were: major surgery to put the equipment in, 3 days on life support for pain relief, taking the ventilator out only for her to crash, watching her die (see my note on my page or Team Kennedy page for more on this), watching her be brought back to life, on life support for another 6 days while we wait to see if there was any brain damage, finally waking up only to learn to walk, talk, and eat again, a second surgery to fix one of the bars after it broke part of her spine off, constant infections, a third surgery to take the second bar out, PT, OT, 23 days in the hospital, and it goes on and on.
The VEPTR saved her life, has allowed her heart and lung to recover and grow normally, and she has never had pneumonia again. But we've faced many other battles since then. Eight months after the VEPTR month from hell, we were once again making the decision to have surgery to save her life. At this point, her sleep apnea was so bad that she was stopping breathing multiple times a night. What was supposed to be a simple T&A turned into: trouble controlling pain (ie, them not listening to us that she has high pain med tolerance due to life support the previous summer), a lung collapse, life support for 5 days, horrendous nursing care, a strep-pneumonia infection in her lungs from the life support equipment, a crash of her antibodies to fight off infections and 2 years of constant sinus infections following this. And a promise from me that my child will never undergo surgery at UNC hospitals again. Which in turn, led to me turning elsewhere for ear reconstruction options.
The years following brought multiple surgeries to lengthen the remaining VEPTR and two surgeries to give her a bone-anchored hearing aid (her lifeline and by far, the best decision we've ever made). But the doctors and hospitals really knew her by this time. These other surgeries were very uneventful and after a quick fix with a shot, she was finally healthy again. And thinking that things were finally going our way for once, we started thinking it might be time to begin the ear reconstruction process.
Kennedy's backstory plays a lot into our decisions on our journey for an ear. Kennedy's backstory have created many scars. We've been on this journey for an ear since the moment she was born but who knew all this journey would entail. And as we constantly wait for the other shoe to drop, we make the decision to jump ship...
(NEXT BLOG: Jumping Ship)
Monday, September 26, 2011
Monday, September 19, 2011
A Fork in the Ear Journey Road
"Two roads diverged in a wood, and I-
I took the one less traveled by,
And that has made all the difference." (RF)
This line from Robert Frost is one that sums up how I feel about the road that we ended up taking in our journey for an ear. Many people would stick with comfort, what they have known for years and years. Our safe road, the road traveled most often, was to stick with our plastic surgeon at UNC. Even though I knew he wasn't a good fit for us, he was still a qualified doctor, a doctor who has followed Kennedy for seven entire years at that point. Her entire life.
But I listened to my instincts. And now I know why. Because it has made all the difference. By this time, the social worker on our craniofacial team had become my sounding board, my friend. She knew I wasn't happy with the UNC plastic surgeon. She knew I refused to allow Kennedy to have surgery at UNC and that I was wary of the process of a UNC doctor operating at another local hospital. She knew I needed to continue on with our journey outside of the UNC Craniofacial Center.
So she put us in touch with UNC's medical artist, a person who specializes in making prosthetic appendages. He was a renowned medical artist, even well-known for making prosthetics for Hollywood. So we met with him with renewed hope. And the first thing he says to us is that he doesn't know why we are there, he wouldn't even think of touching Kennedy till she was at least 13. And because our chart says no surgeries at UNC, he just couldn't help us. I could say that I left that appointment insulted, but frankly I just left pissed off.
A prosthetic was already near the bottom of my list of options. We were really hoping for something that was part of her, something that couldn't be taken off or fall off. And this guy surely turned me against the prosthetic world totally. I realize now that my emotions of this one visit probably clouded this option for us but hindsight is 20/20 (trust me, I know by way too many experiences).
And so my frantic search began. I emailed plastic surgeons from various top hospitals. I looked at picture after picture of their before/after work. I researched using rib grafts vs. using a synthetic frame. I researched every option until I was just exhausted.
I think this is when my mental exhaustion finally kicked in. Have you ever done so much research on something, and found so many options, that you were just overwhelmed and more confused than when you started? This is also when everything became so real and the only thing that my mind kept coming back to was the motto I will repeat every day of my life until I die: NO MOTHER SHOULD HAVE TO DECIDE WHAT HER CHILD'S FACE IS GOING TO LOOK LIKE.
And then it slapped me in the face...we have one of the best hospitals in the world in our backyard. And their plastic surgeon is considered one of the best from all that I've read. Why not take the road less traveled by and try someone else local, someone brand new? And so on September 3rd, 2009, a few months after Kennedy turned 7 years old, we made the trek to Duke Children's Clinic and met with Dr. Jeffrey Marcus, chief pediatric plastic surgeon. And that has made all the difference.
(NEXT BLOG: The Backstory. You'll notice that this blog goes back and forth and forgive me for the volleying. But I tell it in the way it makes sense to me. :)
I took the one less traveled by,
And that has made all the difference." (RF)
This line from Robert Frost is one that sums up how I feel about the road that we ended up taking in our journey for an ear. Many people would stick with comfort, what they have known for years and years. Our safe road, the road traveled most often, was to stick with our plastic surgeon at UNC. Even though I knew he wasn't a good fit for us, he was still a qualified doctor, a doctor who has followed Kennedy for seven entire years at that point. Her entire life.
But I listened to my instincts. And now I know why. Because it has made all the difference. By this time, the social worker on our craniofacial team had become my sounding board, my friend. She knew I wasn't happy with the UNC plastic surgeon. She knew I refused to allow Kennedy to have surgery at UNC and that I was wary of the process of a UNC doctor operating at another local hospital. She knew I needed to continue on with our journey outside of the UNC Craniofacial Center.
So she put us in touch with UNC's medical artist, a person who specializes in making prosthetic appendages. He was a renowned medical artist, even well-known for making prosthetics for Hollywood. So we met with him with renewed hope. And the first thing he says to us is that he doesn't know why we are there, he wouldn't even think of touching Kennedy till she was at least 13. And because our chart says no surgeries at UNC, he just couldn't help us. I could say that I left that appointment insulted, but frankly I just left pissed off.
A prosthetic was already near the bottom of my list of options. We were really hoping for something that was part of her, something that couldn't be taken off or fall off. And this guy surely turned me against the prosthetic world totally. I realize now that my emotions of this one visit probably clouded this option for us but hindsight is 20/20 (trust me, I know by way too many experiences).
And so my frantic search began. I emailed plastic surgeons from various top hospitals. I looked at picture after picture of their before/after work. I researched using rib grafts vs. using a synthetic frame. I researched every option until I was just exhausted.
I think this is when my mental exhaustion finally kicked in. Have you ever done so much research on something, and found so many options, that you were just overwhelmed and more confused than when you started? This is also when everything became so real and the only thing that my mind kept coming back to was the motto I will repeat every day of my life until I die: NO MOTHER SHOULD HAVE TO DECIDE WHAT HER CHILD'S FACE IS GOING TO LOOK LIKE.
And then it slapped me in the face...we have one of the best hospitals in the world in our backyard. And their plastic surgeon is considered one of the best from all that I've read. Why not take the road less traveled by and try someone else local, someone brand new? And so on September 3rd, 2009, a few months after Kennedy turned 7 years old, we made the trek to Duke Children's Clinic and met with Dr. Jeffrey Marcus, chief pediatric plastic surgeon. And that has made all the difference.
(NEXT BLOG: The Backstory. You'll notice that this blog goes back and forth and forgive me for the volleying. But I tell it in the way it makes sense to me. :)
Friday, September 16, 2011
The Start of the Journey
Technically, the journey for an ear started on May 8th, 2002. Miss Kennedy Grace Goodwin entered this world and stole our hearts. Within hours of birth, she was diagnosed with Hemifacial Microsomia/Goldenhar Syndrome: no right ear, only pieces of cartilage; small right jaw; right-side facial paralysis; mishapened head; deaf in right ear; possible vision issues in right eye; large pockets of fluid in her brain; spinal/neck issues; single kidney...just to name the main issues. The birth of our sweet baby girl began the journey for an ear (among other things!). Immediate with the diagnosis was the promise that a doctor could someday fix it, that there are all kinds of options in this day and age. And so our journey began.
At six months old, we made our first trip to the UNC Craniofacial Center. Talk about a nerve-wracking visit...a 6 hour day scheduled to include about 10 different specialists. We met with dentists, orthodontists, speech therapists, a social worker, a psychologist, plastic surgeons, maxofacial doctors, ENTs, audiologists and I'm sure there were more. Each one had their own concern about Kennedy, each one had their own opinion on what her future life would be like. I remember going home and crying that day. I had never felt more alone in my life.
See, that's the thing about having a child with some special need...no one ever really knows what life is like for you unless they walk a very similar path. We all have our own paths that we can say that about (and in no way is this path any more important than your path), but when you're feeling totally helpless where your child is concerned, it can be a very lonely place. I often think about how different coping would be if these same circumstances were freshly thrown at me today, in the time of a social media blitz. But I digress.
From birth, we've been saying that someday a doctor will give her an ear. We made annual trips to the UNC CFC where the plastic surgeon talked every visit about plans for future ear reconstructions. We always knew that we wouldn't move on it till about age 7, an age where the ear has grown close to its forever size. But when she hit 7 and it was time to really make some major decisions, I just wasn't sold anymore.
At that point in Kennedy's journey, she had already had seven surgeries (all life-saving and absolutely necessary). She had died and been brought back to life, something I hope none of you ever have to watch with your children. She had been on life support following two different surgeries within a year of each other. I had also vowed that in order to keep her alive, she would never undergo surgery again at UNC hospitals. Which puts a halt on things when you're dealing with UNC doctors.
At this same time, I also started to trust my instinct on doctors. As long as we were just talking about it, sure, I could discuss it with anyone. But by that point, I was pretty good at determining which doctors were a good fit for us. And even though the UNC plastic surgeon agreed to operate at a different hospital, I knew in my heart that he wasn't the right person. I knew I couldn't move on withour exploring other options. I knew it was time to continue on with our journey...
(NEXT BLOG: A Fork in the Ear Journey Road)
At six months old, we made our first trip to the UNC Craniofacial Center. Talk about a nerve-wracking visit...a 6 hour day scheduled to include about 10 different specialists. We met with dentists, orthodontists, speech therapists, a social worker, a psychologist, plastic surgeons, maxofacial doctors, ENTs, audiologists and I'm sure there were more. Each one had their own concern about Kennedy, each one had their own opinion on what her future life would be like. I remember going home and crying that day. I had never felt more alone in my life.
See, that's the thing about having a child with some special need...no one ever really knows what life is like for you unless they walk a very similar path. We all have our own paths that we can say that about (and in no way is this path any more important than your path), but when you're feeling totally helpless where your child is concerned, it can be a very lonely place. I often think about how different coping would be if these same circumstances were freshly thrown at me today, in the time of a social media blitz. But I digress.
From birth, we've been saying that someday a doctor will give her an ear. We made annual trips to the UNC CFC where the plastic surgeon talked every visit about plans for future ear reconstructions. We always knew that we wouldn't move on it till about age 7, an age where the ear has grown close to its forever size. But when she hit 7 and it was time to really make some major decisions, I just wasn't sold anymore.
At that point in Kennedy's journey, she had already had seven surgeries (all life-saving and absolutely necessary). She had died and been brought back to life, something I hope none of you ever have to watch with your children. She had been on life support following two different surgeries within a year of each other. I had also vowed that in order to keep her alive, she would never undergo surgery again at UNC hospitals. Which puts a halt on things when you're dealing with UNC doctors.
At this same time, I also started to trust my instinct on doctors. As long as we were just talking about it, sure, I could discuss it with anyone. But by that point, I was pretty good at determining which doctors were a good fit for us. And even though the UNC plastic surgeon agreed to operate at a different hospital, I knew in my heart that he wasn't the right person. I knew I couldn't move on withour exploring other options. I knew it was time to continue on with our journey...
(NEXT BLOG: A Fork in the Ear Journey Road)
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