Wow, what an eventful two weeks. Woke up early May 5th, had two caregivers to be sure we didn’t miss anything and then mom and I drove to USC for my surgery. Surgery went fine, I woke up nauseous and a little freaked out. I couldn't breathe or talk through my mouth. I’ll be honest, two weeks later it still does, but everyday becomes less weird and more normal.
 
I encountered a few trials and tribulations on this journey:

1. Not being able to eat or drink is a bummer.
2. Communication is frustrating, even if you have an eye gaze pc there will be times you can’t use it. I wish we’d have practiced with a letter board.
3. I needed 24 hour care in the hospital above my nurses, so I utilized some of my caregivers and my Mom to cover the shifts. They probably had it harder than me, lack of sleep and constant worrying about me.

Everything about this procedure, for me, has been extremely challenging. I had a scare one afternoon when an artery close to my trache ruptured. I had blood filling my lungs, stomach, coming out my trach stoma and my mouth, but guess what, I’m still here.
 
While in the hospital I developed a urinary tract infection, and another blood infection. UTI is simple, pop a few antibiotics and it will clear up. The blood infection is similar, but since I have a port catheter, it became compromised, so I will go under surgery again to remove it from my chest.
 
The good news:

1. Breathing is simple 
2. Clearing mucus from my lungs is way less stressful.
3. I can still speak, albeit you have to deflate the trach cuff and attach a passy muir valve. WHATEVER, I can still talk.

 
And most importantly I am still alive to do my best keeping Ashton in line.

My name is Leila Darki. I am a co- director of ALS Center of Excellence at USC.  
I see every day how ALS affects those I care for and their dedication, love, and good spirits inspire me. I have learned a lot from my ALS patients and their families through this unrelenting journey.  

I came to know Shaun when he saw me for left foot weakness in the summer of 2017. I wish I met Shaun and his mother under different circumstances, however, I am grateful to have the opportunity to be his neurologist.  

Shaun is strong, brave, and full of love. He has chosen to have a tracheostomy so that he could live to watch Ashton, his son, grow up. I met Ashton only once, but being a parent, I can feel the strong bond between him and Shaun. Ashton is a kind and caring boy.   
Shaun’s mom rose to the challenge. Despite, the devastating news, she handled all arrangements immediately. She has provided constant care and emotional support, while also simultaneously accompanying him all his appointments.  
Shaun and his loved ones have truly taught me how to enjoy life purposefully and to cherish every moment with the people around you. I have learned to be proactive and to not put my life on hold.  
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May is ALS awareness month, which is a chance for us all to come together to advocate for ALS patients and their families. Our ALS team at USC is dedicated to providing only the highest quality care to ALS patients and their caregivers. We are devoted to this cause and will not relent until there is a cure.