I've started this blog several times this week. And several times I delete the little that I've actually been able to write. And this has confused me because I need to write. But it dawned on me this evening. Brain surgery may be behind us. Surgery recovery may be finally going our way. But this new journey, it is just beginning. And I haven't yet wrapped my brain around all of this.
It has been a medical whirlwind since I saw Kennedy's latest spine x-rays in the chiropractor's office on August 27th. It kicked off a meeting with her orthopedic surgeon, to an appointment with the head of pediatric orthopedic surgery at Duke, to lung function tests with a pulmonologist, to an MRI of the spine and brain, to an appointment with a neurosurgeon, to brain surgery scheduled ASAP. A lot of new medical terms were used, a lot of information was thrown our way, a lot of new diagnoses were discussed. A lot of tears were cried. A lot of fears were founded. A lot of emotions were expressed. A lot of stress was lived. It was indeed a whirlwind.
But she survived it. She survived brain surgery. She survived anesthesia with 36% lung function. She reinflated her lung on her own. She walked herself out of the hospital. And she is kicking ass at recovery (okay, maybe with the help of some steroids, but still).
But this is only the beginning. Chiari Malformation is a lifelong disease, a battle that Kennedy will fight for the rest of her life. Surgery was performed to give the brain more room, to try and dissolve the syringes that were causing the spinal fluid not to flow correctly, and to prevent any permanent nerve damage and paralysis. What we don't know is whether the surgery will help with any of her symptoms. We don't know if her headaches will be fewer and less intense. We don't know if her breathing will improve. We don't know if this will help her fatigue. We don't know if her internal thermostat problems will go away now.
And what I fear the most, we don't know if this surgery will be the cause of even more symptoms and issues. I need her back in school proving to me that she is still my math whiz, that she's still my smart cookie who learns easily and quickly. Her cognitive abilities have been a silver lining on this journey, something that was a positive in her life of so many negatives and uncertainties. Now that has become an uncertainty. And we don't know if there was permanent damage before the surgery; the surgery will not reverse any damage. We hope that her lung function and gait were not permanently damaged before (although the gait is definitely a little worrisome right now). But she had to have it. We know that - there was no choice. With the amount of pressure that was released with her surgery, and the size of her largest syrinx, the doctor was surprised she wasn't exhibiting more symptoms at this point. I think it was only a matter of time. And only a matter of time before permanent damage set in. She may have had Chiari for years, but the symptoms came on suddenly and quickly.
As Kennedy's brain learns its new normal, as it adjusts to less pressure and more spinal fluid flowing, we also know that the diagnosis of Restrictive Lung Disease (RLD) is still there. Whether it was the Chiari or the RLD causing the low lung function, we won't know until repeat lung function tests in January. We're hoping that the fact that she was able to stop her lung from deflating on her own, and that she was able to keep her respiratory stats up after surgery, that Chiari was the cause and that the surgery was performed before permanent damage was able to take hold. If Chiari was not the cause, then we'll be scheduling a spinal fusion for this winter/spring. I don't think any of us can even fathom that right now. The hope is improved lung function tests and we postpone spinal fusion to allow her to grow some more (and recover from major brain surgery). But we will do what we have to do...the girl has to be able to breathe. Right now, any major respiratory illness could be enough to hospitalize her, if not worse.
No matter what, the RLD is an official diagnosis and one that we never wanted. It is a result of her Goldenhar, the result of her rib cage not forming correctly, not growing correctly. Her left lung does not have room to expand. It may be the cause of the current lung function. If not, it may cause issues in 5 years, 10 years, 20 years, or 40 years. Or it may never cause serious issues. It is something we will monitor on a regular basis and cross the bridge when we get there, most likely with a BIPAP or an external ventilator, trying to avoid a trach and ventilator for as long as humanly possible.
Our hope of all hopes is that she will live a long, somewhat healthy life. We know that many with Chiari and many with RLD qualify for government disability. Kennedy has both. We hope that it doesn't come to this for her. That she can pursue her marine biologist dream. That she can keep scuba diving for as long as she can. We're thankful for those in the dive community who are keeping vigil for Kennedy, assuring her that she'll be back in the water soon. She has to have hope. We all have to have hope.
This journey has never been easy. 20 surgeries, many hospitalization, many many more illnesses. Bad news and rare things happening around every corner. As her mom, my heart breaks. We only want the world for our children. Not knowing what her future, what her world, will be like makes it hard to breathe at times. Watching her suffer over and over. Watching how unfair life can be for her. The day I learned I was pregnant, I knew something wasn't right. Little did I know that that feeling would come back to haunt me over and over again, all at her expense. I would take it all myself if I could. I know it is hard for her to live this life. I cannot discount that at all. But I hope with all of my heart that she never has to know what it feels like to be in my shoes, to watch her child suffer like she has.
She is strong and she keeps me going. She is sarcastic and keeps me laughing. She is sweet and keeps me loving. She is my hero and keeps me humble.
Wednesday, October 28, 2015
Tuesday, September 22, 2015
A glimpse into the heart of a special needs momma during a storm
This blog is my catharsis. I write to get all these thoughts and feelings out of my heart and into words. I share because maybe it will help someone. Or will give someone a glimpse into someone else's sometimes complex and difficult journey and they won't feel alone. And if no one reads it? No worries. Because it is for me and hopefully by the end of writing a new post, I'm feeling more at peace.
Needless to say, my thoughts and feelings have been all over the place over the last few weeks. At times, I feel like we're living in a blur. At other times, the days drag on while we wait for answers, a plan. I'm a planner. I don't do well with surprises and unexpected bumps in the road, so this has all been a little overwhelming. I'm also usually a calm and happy person who tries to always love life, so overwhelming does not fit me well. I'm feeling a little out of sorts, to say the least.
Moms are made to worry about our babies. We try not to let it consume us. But when we're thrown into a storm, there is no avoiding the thunder and lightning. Things weigh heavy on our hearts and our shoulders. We've all been here at one time or another. We learn to dance in the rain. We cannot control the waves, but we learn to surf.
And surfing is exactly what is happening inside my heart right now. A glimpse into the heart of a momma whose child is facing some major health issues. A glimpse into the heart of a momma during a storm...
<3 The support that has been given to us, shown to us, blows me away. From texts to cards to personal messages to flowers to food to treats to gifts...every single gesture and word means more than you can know. I don't ask for anything but prayers and good thoughts. But I've also learned that every little thing helps and I won't turn any gesture away. Life is too much at times not to accept help when it is being offered. So I accept, and I pay forward.
<3 Silence is golden. There are no right words but any words help. I'm not one that believes that everything happens for a reason. Or that if He brings you to it, He will bring you through it. But those words are better than none, if that's what someone truly feels. This doesn't mean I'm looking for comments on every status I post, because I'm not! Just know that if you don't know what to say, simple words go a long way. And this doesn't just apply to us -- this is sound advice for any special needs parent.
<3 The MRI scares me. I should rephrase that the brain MRI scares me. It was added to the spine because of Kennedy's recent headaches. Could they be from the spinal curve and/or lack of oxygen? Yes. But scoliosis can cause issues with the brain. We also know Kennedy has larger than usual pockets of fluid in her brain and it has always been a wing and a prayer that this hasn't caused any issues. And who knows what else could show up in the MRI. I want it over with and the results back. Not knowing is beyond stressful.
<3 We've been here before. But then, her rib cage was still stretchable and we saved her organs for six years. We're beyond that now. There is no good way to fix it this time. They will straighten her spine which will hopefully relieve some pressure on her lungs and heart.
<3 But she will always have the diagnosis of restrictive lung disease. This can mean different things throughout her life. It could mean she will never scuba again. It could mean that a bipap, oxygen cannula, portable vent, or even a trach/vent are in her future. Or it could mean that she just struggles with breathing when active. What it definitely means that every cold, sinus infection, flu, and pneumonia become dangerous to her. For those with restrictive lung disease, these are the things that are life-threatening.
<3 I've been posting a lot -- this has all been moving fast. And they have not been positive posts which actually bothers me, because I try so hard to be a positive person and promote positivity. I'm a silver lining kind of gal. But right now, it is difficult. I'm not looking for likes or comments. I'm just trying to keep people updated and to cope in my own way. When we faced this before - 3 surgeries, one month in the hospital, 9 days on life support, watching her die and be brought back to life, watching her go through drug withdrawal, having to eat and talk and walk again - there was no such thing as social media in my life. It was hard to keep those who loved Kennedy updated, and hard to find the support that we all need when going through such a storm.
<3 I worry about Kennedy. She is pissed. She is scared. She is upset. And she feels crappy. But yet she gathers her strength and gets through all of these stupid tests and appointments as best as she can. I hate that her life sucks so much at times. But as my cousin (by marriage) reminded me today, her life is so good at times too and those are the memories that we have to focus on through all of this, and focus on the good things to come. We had one of the best summers ever (especially Kennedy) and for that I am thankful. And we hope that she can return to "normal" life before next summer. I hope her soul is only bruised during all of this, and not broken. Thirteen is a rough age for a normal girl. let alone one who has to walk this path.
<3 Surgeries suck. This one will especially suck. It scares me that she might stay intubated in PICU for a couple of days. Intubation is always difficult. Extubation is always difficult (especially if not immediate after surgery). Surgeries on lung patients are dangerous, especially when her lung and heart will physically be shifted during surgery. Spinal surgeries can mean a lot of blood loss. And moving the spine is scary, even with nerve mapping in place. I know that it is a surgery that happens every day. And I wish that made me feel better. But I have that child that never quite follows the rules.
<3 I worry about Katie. I'm thankful she is the older sister for my own selfish reasons. I'm thankful that this journey has helped shape who she is and who she is becoming. I'm thankful she is there for her sister. But I know waiting for word from all of these tests and appointments is stressing her out. I know the uncertainty of her sister's future is upsetting her. And I know leaving when Kennedy is still in the hospital post-surgery is going to be hard for her.
<3 I worry about Chelsea. My one prayer has been that she remains stable till after we get through all of this. I don't think any of us could handle having to say goodbye in the midst of this. So far, she's staying pretty stable. But she doesn't do well if her people aren't here and a week in the hospital may be enough to send her over the edge. Kennedy is her baby and she tends to worry about her, even with her dementia.
<3 I feel bad for my friends. I know it isn't easy being my friend at times. It can probably be exhausting in times like this. I don't fall apart often but when I do, they are always there to pick me up and put me back together.
<3 I also have the irrational fears that serve no purpose except to drive me insane. What happens if surgery paralyzes her? What if she doesn't make it? What if I die in a car wreck tomorrow and she has to face all of this without me? And the list goes on. And you can tell me that these are ridiculous as many times as you want...you know they just come with the territory.
<3 No child of any age should be facing their 20th surgery. That's it. No. Child. Ever.
(forgive typos -- the problem is I can spell, I just can't type. and i was too tired to reread through it)
Needless to say, my thoughts and feelings have been all over the place over the last few weeks. At times, I feel like we're living in a blur. At other times, the days drag on while we wait for answers, a plan. I'm a planner. I don't do well with surprises and unexpected bumps in the road, so this has all been a little overwhelming. I'm also usually a calm and happy person who tries to always love life, so overwhelming does not fit me well. I'm feeling a little out of sorts, to say the least.
Moms are made to worry about our babies. We try not to let it consume us. But when we're thrown into a storm, there is no avoiding the thunder and lightning. Things weigh heavy on our hearts and our shoulders. We've all been here at one time or another. We learn to dance in the rain. We cannot control the waves, but we learn to surf.
And surfing is exactly what is happening inside my heart right now. A glimpse into the heart of a momma whose child is facing some major health issues. A glimpse into the heart of a momma during a storm...
<3 The support that has been given to us, shown to us, blows me away. From texts to cards to personal messages to flowers to food to treats to gifts...every single gesture and word means more than you can know. I don't ask for anything but prayers and good thoughts. But I've also learned that every little thing helps and I won't turn any gesture away. Life is too much at times not to accept help when it is being offered. So I accept, and I pay forward.
<3 Silence is golden. There are no right words but any words help. I'm not one that believes that everything happens for a reason. Or that if He brings you to it, He will bring you through it. But those words are better than none, if that's what someone truly feels. This doesn't mean I'm looking for comments on every status I post, because I'm not! Just know that if you don't know what to say, simple words go a long way. And this doesn't just apply to us -- this is sound advice for any special needs parent.
<3 The MRI scares me. I should rephrase that the brain MRI scares me. It was added to the spine because of Kennedy's recent headaches. Could they be from the spinal curve and/or lack of oxygen? Yes. But scoliosis can cause issues with the brain. We also know Kennedy has larger than usual pockets of fluid in her brain and it has always been a wing and a prayer that this hasn't caused any issues. And who knows what else could show up in the MRI. I want it over with and the results back. Not knowing is beyond stressful.
<3 We've been here before. But then, her rib cage was still stretchable and we saved her organs for six years. We're beyond that now. There is no good way to fix it this time. They will straighten her spine which will hopefully relieve some pressure on her lungs and heart.
<3 But she will always have the diagnosis of restrictive lung disease. This can mean different things throughout her life. It could mean she will never scuba again. It could mean that a bipap, oxygen cannula, portable vent, or even a trach/vent are in her future. Or it could mean that she just struggles with breathing when active. What it definitely means that every cold, sinus infection, flu, and pneumonia become dangerous to her. For those with restrictive lung disease, these are the things that are life-threatening.
<3 I've been posting a lot -- this has all been moving fast. And they have not been positive posts which actually bothers me, because I try so hard to be a positive person and promote positivity. I'm a silver lining kind of gal. But right now, it is difficult. I'm not looking for likes or comments. I'm just trying to keep people updated and to cope in my own way. When we faced this before - 3 surgeries, one month in the hospital, 9 days on life support, watching her die and be brought back to life, watching her go through drug withdrawal, having to eat and talk and walk again - there was no such thing as social media in my life. It was hard to keep those who loved Kennedy updated, and hard to find the support that we all need when going through such a storm.
<3 I worry about Kennedy. She is pissed. She is scared. She is upset. And she feels crappy. But yet she gathers her strength and gets through all of these stupid tests and appointments as best as she can. I hate that her life sucks so much at times. But as my cousin (by marriage) reminded me today, her life is so good at times too and those are the memories that we have to focus on through all of this, and focus on the good things to come. We had one of the best summers ever (especially Kennedy) and for that I am thankful. And we hope that she can return to "normal" life before next summer. I hope her soul is only bruised during all of this, and not broken. Thirteen is a rough age for a normal girl. let alone one who has to walk this path.
<3 Surgeries suck. This one will especially suck. It scares me that she might stay intubated in PICU for a couple of days. Intubation is always difficult. Extubation is always difficult (especially if not immediate after surgery). Surgeries on lung patients are dangerous, especially when her lung and heart will physically be shifted during surgery. Spinal surgeries can mean a lot of blood loss. And moving the spine is scary, even with nerve mapping in place. I know that it is a surgery that happens every day. And I wish that made me feel better. But I have that child that never quite follows the rules.
<3 I worry about Katie. I'm thankful she is the older sister for my own selfish reasons. I'm thankful that this journey has helped shape who she is and who she is becoming. I'm thankful she is there for her sister. But I know waiting for word from all of these tests and appointments is stressing her out. I know the uncertainty of her sister's future is upsetting her. And I know leaving when Kennedy is still in the hospital post-surgery is going to be hard for her.
<3 I worry about Chelsea. My one prayer has been that she remains stable till after we get through all of this. I don't think any of us could handle having to say goodbye in the midst of this. So far, she's staying pretty stable. But she doesn't do well if her people aren't here and a week in the hospital may be enough to send her over the edge. Kennedy is her baby and she tends to worry about her, even with her dementia.
<3 I feel bad for my friends. I know it isn't easy being my friend at times. It can probably be exhausting in times like this. I don't fall apart often but when I do, they are always there to pick me up and put me back together.
<3 I also have the irrational fears that serve no purpose except to drive me insane. What happens if surgery paralyzes her? What if she doesn't make it? What if I die in a car wreck tomorrow and she has to face all of this without me? And the list goes on. And you can tell me that these are ridiculous as many times as you want...you know they just come with the territory.
<3 No child of any age should be facing their 20th surgery. That's it. No. Child. Ever.
(forgive typos -- the problem is I can spell, I just can't type. and i was too tired to reread through it)
Wednesday, September 16, 2015
I can't even think of a title...
SO here goes. We spent the majority of the day at Duke Children's today, meeting with a pulmonologist, getting lung function tests, meeting with the pulmonologist again, having a chest CT scan.
I wish I could say that we bypassed the new diagnosis we were dreading, but no such luck. Kennedy was officially diagnosed with severe restrictive lung disease. Symptoms have been exacerbated due to the worsening scoliosis, but her rib cage is the main factor causing this. A normal lung function is 80 or above. Kennedy's overall lung function was in the 30s today. The one caveat to that is that we don't know what Kennedy's normal baseline was, before she started to show symptoms. It could be that even though her lungs are normally clear (minus illnesses) and that her pulse ox is usually great (minus illnesses), that her normal function has been in the 50s for years. We just don't know. But no matter what, 30s is not good. How she is functioning in normal everyday life as well as she is is beyond anyone's guess.
So, will spinal fusion fix her? Bottom line is no one knows. It might help lung function. It might not help lung function. But what it will do is put her rib cage back in a better place which will help stabilize her lungs and keep it from getting any worse. Right now, her lung on the left is being squeezed and twisted due to the shifting of the spine which is pulling the rib cage with it. So does she need spinal fusion? Absolutely. And soon. This has all happened so fast and we do not want it to progress any further and put her in any more danger.
Kennedy will also be going for an exercise study and a sleep study within the next few weeks. The immediate needs that she might have based on these tests will be restrictions in the realm of physical exercise, and the possibility of needing a BIPAP for sleeping. We're praying we're not at this point yet. These tests will also give him a better perspective of how to handle her before, during, and after surgery as he will now be involved and trying to prevent any issues before they even arise. Although he has cleared her for the surgery, surgery on someone with lung function that low isn't ideal. The possible need for keeping her intubated after surgery is strong at this point.
So some questions we're left with:
- Will her CT show anything else that we're missing? It could, but the pulmonologist doesn't think so. It was done after our other appointments but he will call if there is anything else we need to know as a result of it.
- Will her MRI of her spine and brain scheduled for Friday show anything else we need to know about? We don't know and we won't know till next week. It's main function is to give the orthopedic surgeon a better look at her spine and how it is currently functioning. He wants to make sure we're not missing anything related to the spine. We've added the brain to rule out anything unusual there that could be causing her headaches, which we hope are just from the scoliosis and the lack of lung function.
- What does this mean for the future? There is no good way to fix the rib cage so this is a disease she will live with from here on. We hope that the spinal fusion will help stabilize and keep it from getting worse. If the sleep study shows sleeping issues because of this, then a BIPAP will be introduced. This is the first step in breathing assistance for those with restrictive lung disease. There will always be a chance for much more intense breathing intervention as she gets older, if the disease continues to progress. Will it progress? Great question with no certain answer. It will always be there. It might get worse, it might not. Only time will tell. As of this point, every cold, sinus infection, flu, and especially pneumonia becomes more dangerous than it ever has been. Think about how hard it is for you to breathe at times with just a cold and most of you have normal lung function.
- What does this mean for her new-found passion of scuba diving? The answer is still out on this one as well. We're on hold now until after the spinal fusion. The doctor will then perform more lung function tests to determine if she's improving, is stable, or is getting worse. The good news is he didn't immediately say no way, nuh uh. He is open to allowing her to continue depending on future lung function tests, especially given that she has been diving with no lung issues (only sinus) for the last year. And given that our awesome dive instructors are okay with his assessment. When we talked about this over lunch, she teared up but being the mature person she has always had to be...said that as much as she wants to do it, it isn't worth dying from. Of course, she's hoping for the best possible outcome on this question and to swim with the sharks soon.
This is one storm that will never pass, so it's a good thing we have learned to dance in the rain.
I wish I could say that we bypassed the new diagnosis we were dreading, but no such luck. Kennedy was officially diagnosed with severe restrictive lung disease. Symptoms have been exacerbated due to the worsening scoliosis, but her rib cage is the main factor causing this. A normal lung function is 80 or above. Kennedy's overall lung function was in the 30s today. The one caveat to that is that we don't know what Kennedy's normal baseline was, before she started to show symptoms. It could be that even though her lungs are normally clear (minus illnesses) and that her pulse ox is usually great (minus illnesses), that her normal function has been in the 50s for years. We just don't know. But no matter what, 30s is not good. How she is functioning in normal everyday life as well as she is is beyond anyone's guess.
So, will spinal fusion fix her? Bottom line is no one knows. It might help lung function. It might not help lung function. But what it will do is put her rib cage back in a better place which will help stabilize her lungs and keep it from getting any worse. Right now, her lung on the left is being squeezed and twisted due to the shifting of the spine which is pulling the rib cage with it. So does she need spinal fusion? Absolutely. And soon. This has all happened so fast and we do not want it to progress any further and put her in any more danger.
Kennedy will also be going for an exercise study and a sleep study within the next few weeks. The immediate needs that she might have based on these tests will be restrictions in the realm of physical exercise, and the possibility of needing a BIPAP for sleeping. We're praying we're not at this point yet. These tests will also give him a better perspective of how to handle her before, during, and after surgery as he will now be involved and trying to prevent any issues before they even arise. Although he has cleared her for the surgery, surgery on someone with lung function that low isn't ideal. The possible need for keeping her intubated after surgery is strong at this point.
So some questions we're left with:
- Will her CT show anything else that we're missing? It could, but the pulmonologist doesn't think so. It was done after our other appointments but he will call if there is anything else we need to know as a result of it.
- Will her MRI of her spine and brain scheduled for Friday show anything else we need to know about? We don't know and we won't know till next week. It's main function is to give the orthopedic surgeon a better look at her spine and how it is currently functioning. He wants to make sure we're not missing anything related to the spine. We've added the brain to rule out anything unusual there that could be causing her headaches, which we hope are just from the scoliosis and the lack of lung function.
- What does this mean for the future? There is no good way to fix the rib cage so this is a disease she will live with from here on. We hope that the spinal fusion will help stabilize and keep it from getting worse. If the sleep study shows sleeping issues because of this, then a BIPAP will be introduced. This is the first step in breathing assistance for those with restrictive lung disease. There will always be a chance for much more intense breathing intervention as she gets older, if the disease continues to progress. Will it progress? Great question with no certain answer. It will always be there. It might get worse, it might not. Only time will tell. As of this point, every cold, sinus infection, flu, and especially pneumonia becomes more dangerous than it ever has been. Think about how hard it is for you to breathe at times with just a cold and most of you have normal lung function.
- What does this mean for her new-found passion of scuba diving? The answer is still out on this one as well. We're on hold now until after the spinal fusion. The doctor will then perform more lung function tests to determine if she's improving, is stable, or is getting worse. The good news is he didn't immediately say no way, nuh uh. He is open to allowing her to continue depending on future lung function tests, especially given that she has been diving with no lung issues (only sinus) for the last year. And given that our awesome dive instructors are okay with his assessment. When we talked about this over lunch, she teared up but being the mature person she has always had to be...said that as much as she wants to do it, it isn't worth dying from. Of course, she's hoping for the best possible outcome on this question and to swim with the sharks soon.
This is one storm that will never pass, so it's a good thing we have learned to dance in the rain.
Saturday, September 5, 2015
No Strangers to Disappointment, But Still...
For those who have been waiting...
We are no strangers to disappointment on this journey. My Timehop app has proved that over the last couple of weeks, as I've relived the nightmare of Kennedy's second ear reconstruction and the MRSA that destroyed all hope of her having a permanent ear four years ago. And that's only one example. We're never ready for disappointment, and we're never equipped to handle it gracefully. But we do what we have to do to get through it and get her healthy and do the best we can for her.
Once again, disappointment has reared its ugly head. And once again we weren't ready and I'm struggling with how to deal with it. Goldenhar is complex to say the least. It involves many body parts and systems and there is never really much rhyme of reason as to when the next major hurtle presents itself.
In February, we went to visit Kennedy's orthopedic surgeon and I knew it wasn't going to be great news. Last August had been the best x-rays of Kennedy's recent years, down to a scoliosis curve of 28* and her rib cage still growing on its own. Going into that February appointment, I knew her "good" shoulder blade was sifting which most likely meant her spine was shifting. The February x-rays showed that the curve had worsened to 38*, that the spine was starting to twist, and that her shoulder blade was being shifted. It was time to brace. Kennedy has been wearing her torture device almost every night since, trying to keep things stable and pull her shoulder blade back into place.
I knew it wasn't working...you could tell by just looking at her. But in the meantime, we had taken her surgeon's suggestion to visit a chiropractor, to see if he could help loosen things up and try to gain more mobility and flexibility. He took x-rays so he knew what he could and couldn't move, what had a chance of benefiting from chriopractic techniques. A couple of days later, we went in to discuss the x-rays and hear his plan for moving forward. As he brought the x-rays up, Kennedy listened to him explain what we were looking at and how he was going to help her. I couldn't even listen to his word...I was looking at the x-rays thinking HOLY SHIT. They were so much worse than her February x-rays. Not only was the scoliosis curve measuring at 60*, her rib cage was also shifting and her lung and heart were clearly in danger.
Which brought us to Friday's appointment. I emailed the x-rays off to her orthopedic surgeon and he agreed that there was reason for concern. So Katie and I went in to see him Friday morning. He sat in his office with us, answering all my questions. He tried to be optimistic, but bottom line is that surgery is inevitable. Highlights, if you can call them that (and I'm probably forgetting some):
- The spinal curve itself isn't the big concern. But it is causing many other issues that are huge concerns. Because she has always dealt with spinal issues, he thinks this is a blessin as she isn't in constant pain like other girls her age would be who are just developing scoliosis.
- Because of the curve, her rib cage on the left has shifted drastically. This is causing her heart and lung to be moved/squeezed/in danger. Kennedy has always had lower capacity than most kids her age, but we have noticed this worsening over the last few months.
- In addition to the shift of the rib cage, he is also afraid that the left rib cage is also starting to collapse inwards. There is no easy fix for this.
Her doctor is not performing surgeries right now so we meet with a Duke doctor on Thursday. It will be his ultimate decision on what needs to happen and when. But it sounds like:
- A spinal fusion will be done to straighten the spine as much as they can. This may get her down to the 20s, but it also depends on how flexible her spine is once they would get in there.
- She will most likely have to do respiratory function testing and nerve mapping before undergoing surgery.
- Spinal fusion means at least a week in the hospital, some of this in PICU. There is a chance that the surgeon will decide to go a different route, which means she could be stuck in the hospital for months in traction, between two different surgeries.
- Her current doctor is worried about the huge shift this will cause on her rib cage/lung/heart all at once and she may not be able to be extubated until at least 24 hours post-surgery. With her history of extubation, this scares the hell out of me.
- Spinal fusion would mean missing 4-6 weeks of school, and 3-6 months to return to regular activities. She will have to learn how to move in a whole new way.
- Her spine will quit growing where it is fused. However, he thinks she will gain at least one inch upon straightening.
Timing is a huge question right now. Her current doctor isn't sure she can wait till summer, which is when they try to schedule these due to the school aspect. And we're not sure that would be the best choice anyway...she starts high school next August and stressing over healing in time for that may be too much for all of us. With her increasing shortness of breath and fatigue, he is thinking it will probably need to be sooner rather than later. This will cause some extra heartache due to some things that are in the works, including a possible trip to Disney and a trip to the Bahamas so she can scuba with a renowned shark expert. But no time is a good time.
I hate Goldenhar Syndrome with all of my being.
For now, I've had the blessing of keeping all of this from Kennedy. With the death of a friend from cancer (something else I hate with all of my being) and his celebration of life today, she has had enough heartache to handle at the moment. But between now and Thursday, I must fill her in. Those who have lived through the age of 13 with a girl can only imagine how this is going to play out. At a time when we have to work to bring her out of her teenage moods, we were warned that this will probably make that even worse. Life will be a nightmare for awhile in the Hendershott/Goodwin household.
In the end, we will depend on the love and support of Team Kennedy. What would we do without you?
Monday, August 17, 2015
To Pee or Not to Pee -- There is No Question
In the last hour I have read two very selfless, very giving stories of kidney donation. These stories not only amaze me, but also give me hope should we have to cross that bridge in the future. To know that there are such selfless people out there, people willing to go above and beyond for someone else in such a way.
One aspect of Kennedy's syndrome that doesn't get a lot of discussion is the fact that she was born with only one kidney. Her craniofacial syndrome can affect any organ system in her body, and most regularly affects the heart. So far, Kennedy's heart has been okay. But although a special Level II ultrasound showed two kidneys (or at least that's what the tech and radiologist claimed), Kennedy was born with only a single kidney. It is larger than the normal kidney and the placement is different than a left or right kidney would be.
Thankfully, her kidney works, albeit different than yours and mine. Kennedy can go many, many hours (I'm talking like 10) before bathroom trips. She is not one that can go on a schedule and she cannot "try" as we all force our children to do before leaving the house or climbing in the car. When she has to pee, she has to pee. When she doesn't, she doesn't. Simple as that.
All of the information you can find will tell you that those born with one kidney can live healthy, normal lives and most likely never have any kidney trouble. But you've also heard me say that we are always waiting for the other shoe to drop. That's the thing with her syndrome - their is no norm, anything could go haywire at anytime, and all of the information you can google doesn't necessarily apply. On top of that, Kennedy has a long history of high blood pressure issues on her maternal side (I've been on medication since I was in my late 20s), and high blood pressure doesn't play well with kidneys either.
So bottom line is, we have to do everything we can to keep her kidney healthy. We have a kidney function test performed every year. We limit the salt in her diet. We very much limit her caffeine intake (Coke on special occasions only). We test for strep with every sore throat that lasts more than a day. We keep her away from those that have strep throat. We make sure she drinks lots of water. We don't let her play contact sports. We have a 504 Plan in place that provides her bathroom access as needed at school. We avoid ibuprofen and other NSAIDs, which break down in the kidneys. And this last one is not easy considering the pain that she is often in after surgery or with her back, not to mention all the high fevers with her flu bouts and sinus infections.
And we hope that ever there comes a time when she needs a kidney, there is a selfless person willing to test for a match, and willing to donate. Her entire family is ready to donate one in a heartbeat, but we also know that it may not work out that way.
So as I worry when I ask at 3pm if she's peed today and the answer is no, or as I worry because it is 3pm and she has peed 4 times already...these are the stories I need to keep that worry in check. I want her to live a long, healthy life with her own kidney. But if that other shoe drops and her kidney should fail, I need these stories to remind me that there are people in this world who go above and beyond. And although these stories were living donations, PLEASE BE AN ORGAN DONOR. Your kidney (or heart or eyes or lungs or etc.) will do you no good when you've left this earth but may just save a life.
(and ps - if Kennedy reads this one she may just kill me :) )
Thursday, June 25, 2015
Welcomed with Open Arms
Let's start at the very beginning, a very good place to start. The short version is Kennedy was named Children's Miracle Network Hospitals Champion for NC. During an interview she said she wants to learn how to scuba dive someday. Air Hogs Scuba of Clayton NC learned of this and reached out to us. Air Hogs worked with Kennedy to overcome all of her medical obstacles and certified her in October of 2014 as a scuba diver. Kennedy was ecstatic.
It could have ended there. They could have said it was great to meet you, good luck, and sent her on her way. But they didn't. Instead, they have given Kennedy opportunities that I never could. They have become friends and have introduced us to more new friends. They have and continue to assist her follow her dreams. They have welcomed her with open arms.
I'll be the first to admit that I know nothing about scuba diving, other than anyone who does it is quite possibly nuts. And I mean that in the sincerest way. I don't know the terms, I don't know the gear, and I don't know what possesses people, including my daughter, to want to do it. Before all of this, I had no idea that there was a dive community per se, and what that actually means. But I'm learning quickly and to say that I'm impressed with these people would be an understatement (although I still think they are nuts).
Three weeks ago, Kennedy was given the opportunity to visit the Florida springs area and dive in natural springs. Up to that point, she had only been in a pool and lake so this was a big step for her (and me). She was excited but nervous. It was her first dive since October and she was rusty on her training. But she did it and she loved it. She got to explore a cavern with one of the most famous cave divers. She got to dive with her first female instructor. She got to see crystal clear water, play in the spring turbulence, experience duckweed (um, yuck). And she absolutely loved it.
What I loved about it? These amazing people. They invited us down. They made the dive plans. They took the time to dive with Kennedy. They accepted Kennedy for who she was and just made sure she had a great time (and that she was safe!). And this last one is huge to me. Those close to Kennedy sometimes have a hard time understanding the Kennedy they see regularly to the Kennedy who struggles in social situations with new people. Although she has come a looooong way, she is still shy with new people and in new situations. I think some people see this as her being rude or disrespectful sometimes, but I assure you that isn't the case. With all that she goes through, with all the times she has been made fun of or laughed at or pointed at, socializing is not her strong-suit. She has a hard time looking people she doesn't know well in the eye and she sometimes gets tongue-tied and has trouble carrying on conversations in social situations with others besides friends and family. We're working on this but it is a process. The thing is, these amazing people looked past all of that. They went out of their way to make sure she had an amazing experience. I just hope they understand how huge that was, how much it meant to Kennedy. By the end of the trip, Kennedy was opening up to Bre and that touched my heart...I think Kennedy finally felt secure in finding that female diving role model.
For this weekend, we sincerely thank Lamar Hires from Dive Rite and John McCain and Bre Grant from Narked Scuba. And we thank Peter Lapin for his amazing photography of the trip. You all welcomed Kennedy (and us) with open arms.
Last week, Kennedy was provided the opportunity to visit Florida again, this time on the ocean. We spent Friday morning touring SDI and meeting the awesome folks that helped make the trip happen. Saturday morning, Kennedy was joined by many from SDI for a dive under the Blue Heron Bridge, where she got to swim with octopuses, seahorses, starfishes, and many other marine critters. In addition to giving Kennedy a wetsuit to call her own and having us over for dinner, Peter (and Christy) of Stuart Scuba also gave us his dive boat and crew on Sunday to allow Kennedy to dive out in the deep. Joined by Thomas, Jon, and Lauren she didn't meet up with any of her beloved sharks but got to see plenty of other marine life, including grouper that were larger than her. As if she wasn't hooked before, this trip sent her over the edge.
What I loved about it? These amazing people. They spent their weekend watching my girl chase her dreams. They went above and beyond. And again, they accepted her for who she is. And again, I hope they know what this meant to her, how much she loved it. This opportunity opened her eyes to a whole new world, one that she instantly fell in love with. And now that Lauren has entered our life, Kennedy has two female diving role models.
For this weekend, we sincerely thank all of those at SDI including Brian and Stephanie Carney, Sean Harrison, and Jon and Lauren Kieren. We thank Peter Friedman and Christy Campbell of Stuart Scuba. And we thank Peter Lapin for making the trek over to once again capture Kennedy's experience under the water. You all welcomed Kennedy (and us) with open arms.
Our entrance into the dive community/world so far has been more than I could have ever imagined. The people have been amazing, their generosity has been amazing, their friendship is going to be amazing. Not only did they spend these weekends with us, but they all sincerely invited us back. And we plan to take them up on that. Everyone literally welcomed us with open arms.
For all of this, we sincerely thank Thomas Powell, Josh Norris, Ray Wickham, and all the others at Air Hogs Scuba.
Thursday, March 19, 2015
The Beautiful Thing Is, She Talks
I was sitting at the dinner table last night, listening to Kennedy talk. Yes, we sit at the dinner table. I have always been a firm believer of this concept, which I have my own parents to thank. From birth, my girls have sat at the table for dinner with us, eating what we eat once they were old enough, and spending time as a whole family. Sometimes a lot is said and sometimes it is pretty quiet. But I digress.
I was sitting at the dinner table, listening to Kennedy talk. Most of you probably think Kennedy is on the shy side. And outside of our home, outside of our family, she is (although she's come a LONG way). But when Kennedy is comfortable and in a talking mood, those close to her will tell you that it is hard to get her to be quiet. And she's like her Dad - telling long stories with details that just don't matter. There are times we all (sadly) tune her out till she gets to her point. And honestly, I don't even remember what she was talking about last night. I wasn't listening to her story, but I was listening to the words.
Kennedy has multiple whammies against her when it comes to speech. She has facial paralysis. She has palate paralysis. She may have some other paralysis of sorts within her mouth and throat that we aren't sure about and she wouldn't know the difference to tell us. She has floppy vocal cords. She has constant sinus drainage. She could not hear well for her first three years of life when speech was ramping up. She hears herself differently than you and I hear ourselves because of her severe hearing loss and use of BAHA (which as a side note, if you talk close to you will hear your own voice echo within her head...pretty freaky phenomenon).
But the beautiful thing is, she talks. And most people can understand her, although that always hasn't been the case. And she has come so far.
For the first few years of life, only those around her on a daily basis could understand what she was saying. We had to do a lot of interpreting for others. Then we started a preschool speech therapy program offered by our local school system. There we met Ms. Ortosky (who is a Team Kennedy follower!), who will ever hold a very special place in my heart and although she doesn't wear a white coat like our other angels, she is considered one of our angels nevertheless. Ms. Ortosky worked with Kennedy for two years and made strides with her speech that we never thought would be possible. The day she conquered the "s" sound, I cried like a baby in the hallway (where I sat during sessions) while Ms. Ortosky celebrated with Kennedy in their room.
We unfortunately graduated from preschool speech and entered the world of elementary speech therapy. Private speech therapy agencies had atmospheres that were too much like a doctor's office and were not a good fit for Kennedy so we were limited to what was offered in the schools. In her six elementary years, Kennedy went through three speech therapists. The last one made some other big strides like the "sh" sound and the "r" sound in certain letter combinations. And then in fifth grade it was decided that the social non-acceptance of speech therapy from peers (more on this soon) was far more detrimental than any further success that the therapy could provide Kennedy, so we exited from speech services.
Almost thirteen years later, speech doesn't come easy for Kennedy. She still struggles with the paralysis issue and she doesn't sound like others when she talks. She gets lazy with certain sounds if she doesn't pay attention. When she is sick or really tired, she slurs a lot of her speech and even I have a hard time understanding her. She still has issues with some of the sounds -- "r" is a super-tricky one for her when it falls in certain places within a word. The "str" takes a lot of thinking on her part...the "t" often gets left out of such words. You and I speak and never think about it...it is second nature for Kennedy to think about how she speaks.
What I'm most proud of is that she doesn't let this bother her. I know she gets made fun of at times because of the way she says certain words or how she sounds in general when she talks. I know she gets irritated at me when I point something out and remind her how it should be said (this is done sparingly and in a loving way folks, only as a gentle reminder). I know she gets too tired and feels too crappy at times to even try. But she keeps talking. To everyone. And if she needs to, she repeats something. As many times as someone needs her to (she may spell it out if she gets irritated enough).
You know I'm all about acceptance for those who look different. Know that I'm also all about acceptance for those who sound different. Kennedy will forever work on her speech but she will never sound like most people when she talks. Too many whammies out of her control. Let's try to teach our kids that speech isn't a given for everyone. And not everyone who can talk, sounds like you or I. And it is okay for kids to attend speech therapy in school and this is not a reason to make fun of someone.
But the beautiful thing is, she talks.
I was sitting at the dinner table, listening to Kennedy talk. Most of you probably think Kennedy is on the shy side. And outside of our home, outside of our family, she is (although she's come a LONG way). But when Kennedy is comfortable and in a talking mood, those close to her will tell you that it is hard to get her to be quiet. And she's like her Dad - telling long stories with details that just don't matter. There are times we all (sadly) tune her out till she gets to her point. And honestly, I don't even remember what she was talking about last night. I wasn't listening to her story, but I was listening to the words.
Kennedy has multiple whammies against her when it comes to speech. She has facial paralysis. She has palate paralysis. She may have some other paralysis of sorts within her mouth and throat that we aren't sure about and she wouldn't know the difference to tell us. She has floppy vocal cords. She has constant sinus drainage. She could not hear well for her first three years of life when speech was ramping up. She hears herself differently than you and I hear ourselves because of her severe hearing loss and use of BAHA (which as a side note, if you talk close to you will hear your own voice echo within her head...pretty freaky phenomenon).
But the beautiful thing is, she talks. And most people can understand her, although that always hasn't been the case. And she has come so far.
For the first few years of life, only those around her on a daily basis could understand what she was saying. We had to do a lot of interpreting for others. Then we started a preschool speech therapy program offered by our local school system. There we met Ms. Ortosky (who is a Team Kennedy follower!), who will ever hold a very special place in my heart and although she doesn't wear a white coat like our other angels, she is considered one of our angels nevertheless. Ms. Ortosky worked with Kennedy for two years and made strides with her speech that we never thought would be possible. The day she conquered the "s" sound, I cried like a baby in the hallway (where I sat during sessions) while Ms. Ortosky celebrated with Kennedy in their room.
We unfortunately graduated from preschool speech and entered the world of elementary speech therapy. Private speech therapy agencies had atmospheres that were too much like a doctor's office and were not a good fit for Kennedy so we were limited to what was offered in the schools. In her six elementary years, Kennedy went through three speech therapists. The last one made some other big strides like the "sh" sound and the "r" sound in certain letter combinations. And then in fifth grade it was decided that the social non-acceptance of speech therapy from peers (more on this soon) was far more detrimental than any further success that the therapy could provide Kennedy, so we exited from speech services.
Almost thirteen years later, speech doesn't come easy for Kennedy. She still struggles with the paralysis issue and she doesn't sound like others when she talks. She gets lazy with certain sounds if she doesn't pay attention. When she is sick or really tired, she slurs a lot of her speech and even I have a hard time understanding her. She still has issues with some of the sounds -- "r" is a super-tricky one for her when it falls in certain places within a word. The "str" takes a lot of thinking on her part...the "t" often gets left out of such words. You and I speak and never think about it...it is second nature for Kennedy to think about how she speaks.
What I'm most proud of is that she doesn't let this bother her. I know she gets made fun of at times because of the way she says certain words or how she sounds in general when she talks. I know she gets irritated at me when I point something out and remind her how it should be said (this is done sparingly and in a loving way folks, only as a gentle reminder). I know she gets too tired and feels too crappy at times to even try. But she keeps talking. To everyone. And if she needs to, she repeats something. As many times as someone needs her to (she may spell it out if she gets irritated enough).
You know I'm all about acceptance for those who look different. Know that I'm also all about acceptance for those who sound different. Kennedy will forever work on her speech but she will never sound like most people when she talks. Too many whammies out of her control. Let's try to teach our kids that speech isn't a given for everyone. And not everyone who can talk, sounds like you or I. And it is okay for kids to attend speech therapy in school and this is not a reason to make fun of someone.
But the beautiful thing is, she talks.
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