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)

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.

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?