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.
