541 days. One brain surgery. A recovery to hell and back. A spinal fusion. A severe infection. A spinal infection clean-out surgery. IV antibiotics and home healthcare. Months of oral antibiotics. 37% lung function. Tests and clearance by a dive medicine specialist. And just plain feeling awful.
Remember in our last article where we said she believed she could, so she did? Well scuba friends…let me tell you that she did it again. With the odds stacked against her….stacked so high we couldn’t see the surface of the water. After all of this, Kennedy was back under the sea, like she never skipped a beat and with no issues whatsoever. Let me tell you a little story about how we got back here, after 541 days of not knowing whether she would ever dive again.
She was hooked
In the summer of 2015, our awesome scuba team at Air Hogs Scuba took Kennedy diving in both the Florida Springs as well as the Atlantic Ocean off the coast of Florida. She was hooked. But as the summer wore on, Kennedy wore out. She was having major headaches, overheating, and had major fatigue among some other weird symptoms. Even swimming in the pool with her friends was too much…she was usually found sitting on the stairs while the rest splashed around. She went diving one last time in August of that summer, before school started. The next week, an x-ray showed such a rapid decline in her scoliosis progress that we found ourselves immediately in a new orthopedic surgeon’s office. But he wasn’t convinced that this was a scoliosis-only issue. So off to the pulmonologist we went, where we learned that her lung function was down to 37% – her lungs work fine, but they are restricted due to her spinal and rib cage issues. We had been here before and didn’t ever want to be back. Her heart and lungs were literally being squeezed. Then an MRI sent us straight to a neurosurgeon, where she was diagnosed with Chiari Malformation I and Syringomyelia.
Chiari is a brain condition where the brain tonsils slip into the spinal column. Syringomyelia is a related disease, where cysts form in the spinal column and cerebral spinal fluid cannot flow properly. Both can lead to paralysis and both can be fatal if not treated. So, emergency brain surgery was performed in October of 2015. Recovery was hell…there is no other word. Unfortunately, the brain surgery didn’t improve the lung function at all, which was a small hope. Our only hope to prevent a further decrease in lung function was for her to undergo a spinal fusion, a major surgery for a 13 year old. So five months after brain surgery in March of 2016, while her brain was still trying to heal and reset itself, her spine was fused. Recovery was rough once again.
Two weeks later, she spiked a fever so we went to the ER and she was diagnosed with a major infection, admitted to the hospital, and yet another emergency surgery was performed the next day – this one to clean out an infection in her spine and along the spinal hardware. She was sent home with a PICC line, IV antibiotics, and home healthcare. Then we switched to oral antibiotics. No matter what, she just wasn’t clearing the infection and just wasn’t returning to normal. Even so, we spent some time with a dive medicine specialist at Duke Dive Medicine who cleared Kennedy to try diving again, with some restrictions till we knew what she could handle after all she had been through. This clearance gave her some hope but she just wasn’t feeling up to it yet.
Fast forward to late December 2016
Kennedy’s spinal surgery scar split open and infection was leaking out. It was clear at that point that surgery would be needed again, but a plan was formed by numerous doctors to wait until March, one year post-spinal fusion, and remove the hardware (which only serves a purpose for a year, till the bone is fused). The thought of this surgery…well, it wasn’t happy. It was causing major anxiety and depression.
But! Another plan was forming – this one by our friends at Air Hogs Scuba, along with the wonderful Peter Friedman and Christy Campbell at Stuart Scuba. They realized how important it was to give Kennedy a chance to scuba before she had to face yet another surgery, her 23rd surgery overall. With the dive medicine doctor’s blessing, they were willing to take her under, despite her lung function and brain/spinal surgeries. The plan was implemented. We headed to Stuart, Florida in February 2017 for a magical scuba weekend. Sharks were the goal, as they are Kennedy’s spirit animal and who she wants to spend her future career with. I won’t pretend that it was easy to let her go back down. I won’t pretend I didn’t lose it up on top. So many emotions were on display that day. But in the end, these folks have my trust and only they could give my girl what she needed…..what she wanted. I cannot even begin to explain what the generosity of these awesome people meant to us that weekend. There are no words. They gave her exactly what she needed right then – scuba, sharks (!!), freedom, and hope. She had a weekend to look back on and know that she can do it. She had future dives to look forward to. Her smile, coming up on that boat after diving with the sharks, was enough to get her through what she needed to get through.
I’m happy to say that Kennedy breezed through the spinal hardware removal surgery in March of 2017 and has been announced infection free for the first time in 14 months! Antibiotics will be stopped soon. She’s feeling better than she has for several years now, even walking a 5k less than 6 weeks post-op. And she’s ready to get wet again, in the ocean, with her sharks, and our amazing scuba friends.
In Kennedy’s Words…
After all my new medical stuff, I knew I would be able to dive again, no matter what others said – or didn’t say – including my doctors. It was a question that no one could or would answer but I just knew. Medical stuff is not going to define me. And sure enough in February 2017, we went to Florida and I went diving again for the first time since 2015. Sharks, schools of fish, turtles, other sea animals…it was so fun and cool to see! My favorite by far was being so close to the sharks, as well as having turtles swim right past us. Protecting these creatures is what I want to do with my life. Scuba diving is my passion and I can’t imagine not doing it.
I am very thankful for the opportunity to dive and to continue following my dreams, which wouldn’t be possible without the people at Air Hogs Scuba and those in Florida who continue to support me. I owe them so much, but words just don’t work. I will never be able to repay them for what they have given me, the underwater world they have showed me and continue to show me. They give me freedom from medical stuff, and only they can give me that.
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