Just Nod If You Can Hear Me: My Diffuse Axonal Injury Diagnosis (DAI)
The next email was written on the morning of Friday the 13th, 2011.
Sent: Fri, May 13, 2011 7:09 am
Subject: Cavin Update Friday May 13th
Just wanted to give you an update. When I arrived at the hospital yesterday, Cavin was restless and showing signs of arousal. I put my hand in his and asked him to squeeze it if he could hear me… he did. I asked him to hold up 2 fingers… with delayed response he did, same with wiggling some toes. He still hasn’t opened his eyes, but that is partially due to the sedation medication he’s on.
Repeat CT scan yesterday showed no increase in cranial pressure. Will repeat today. Fracture in hip (pelvis) shows no major dislocation.
The brain injury explains his combattive behavior when we tried to wake him up on Monday… it is likely that he will have personality change (aggressive, combattive) for months to come as he heals.
The lungs are also of great concern… he has pneumonia and is on heavy antibiotics.. We hope to get the tube out of his throat today and wake him up. He is not using his left side much, though every so often he will hyperextend his left leg to stretch it. The left hand doesn’t seem to respond with much strength though it does have some movement.
Thank you so much for all your love and support and prayers for him… I know that some of you have been through these types of situations and are probably experiencing your own PTSD!! I draw from your strength, and knowing that the worst of all parents fears has been experience by so many people and that we keep on keepin on despite what happens.
Best to all
Isn’t she amazing! How can someone be so strong and be so articulate during such a difficult time. I am in awe.
So I was kinda responding to some simple commands while in a coma. It is amazing how the brain is still processing things even though it is unconscious.
I measured 5 points out of 15 on the Glasgow Coma Scale (GCS). The worst rating is 3. A rock has a GCS of 3. I do not truly know how terrible this period was. I only know how terrible the following months were. Apparently I had another failed extubation on May 16th.
Sent: Mon, May 16, 2011 11:27 pm
Subject: Cavin day 10
We had a pretty bad setback today. They took the breathing tube out and put Cavin on a BiPap (??) mouth breathing machine. He lasted 1 1/2 hrs, became panicked, ripped IVs out, etc. They were able to intubate him again but lots of blood coming from his lungs… spiked fever.
Culturing sputum and blood (2 sizeable bottles). They worked on him for 4 1/2 hours. He is in bad, bad shape, I’m sorry to report. He had opened his eyes this morning and the doctor made the call to extubate him. Apparently they now feel that his mental status wasn’t sufficient, plus his lungs were not sufficiently strong to have put him through that.
Ammon (my father) and I are as scared as we’ve ever been. Tonight and tomorrow are going to be critical to see if they can stabilize him again. They said they’d try to extubate him again maybe at the end of the week.
Tomorrow will be day 10 on life support. Please pray your asses off. Thank you for your love;
The medical reports say that I had an MRI done on May 16th, the day after this failed extubation, and my mother must not have gotten the results until the next day. The MRI was given one week and a day after I fell. This was done to further see what damage was inflicted on my brain. The MRI now showed shearing of the corpus colossum. I had a Diffuse Axonal Injury which they could not see in the CAT scans. Wikipedia says this in its description of Diffuse Axonal Injury (citing Wasserman J. and Koenigsberg R.A. (2007). Diffuse axonal injury. Emedicine.com. Retrieved on 2008-01-26.):
“Diffuse Axonal Injury (DAI) is one of the most common and devastating types of traumatic brain injury, meaning that damage occurs over a more widespread area than in focal brain injury. DAI, which refers to extensive lesions in white matter tracts, is one of the major causes of unconsciousness and persistent vegetative state after head trauma. It occurs in about half of all cases of severe head trauma and also occurs in moderate and mild brain injury.
The outcome is frequently coma, with over 90% of patients with severe DAI never regaining consciousness. Those who do wake up often remain significantly impaired.”
It is ironic that the band that I saw the night of my plunge was called Brain Killer! A diffuse Axonal Injury sure sounds like a good way to kill a brain.
The doctors described that I had a DAI and what the outcome would probably be to my mother. She passed the information to some of my family and asked for more information from friends and family, but kept it from MY friends. My family was terrified at this probability. My friend Jenn told me recently that friends and family of hers told her to start saying her goodbyes to me, and they did not even know that I had a DAI.
I can not even imagine what it was like to be in my friends’ or family’s shoes. To be suddenly confronted with the possibility of a good friend or family member dying. And there is little to nothing that they could do. Terrifying!
The next day they attempted to extubate me again.
Sent: Tues, May 17
Subject: Cavin Balaster Day 11
Current status- extubated him again…can’t seem to rouse him to consciousness enough to cough up what he needs to, though with suctioning and agitation he does cough – they have been able to get a lot of gunk out of his lungs through great effort. His breathing is shalow and fast… and they may make the decision to intubate him again and then schedule a tracheostomy.. where they put a line directly into the trachea. This will be a planned procedure unless they have to intubate him and cant get an airway… then it’s an emergency trach.. and not a good scenario. They were able to get an airway last time, so hopefully they will get one again if needed. He is on the borderline of intubation but they are doing everything possible to prevent having to do it again. That decision is based on his rate of respiration (fast, shallow breaths are not acceptable for any length of time). They have given him Ativan to calm him and pain meds and are trying to keep him calm through the night, suctioning as they can. If he could only come fully conscious he could cough it up… they suspect that the shearing in his left temporal lobe may be the cause of his inability to get conscious for long… He does squeeze one’s hand on command, and wiggle his toes on command and hold up two fingers when asked… though he was less responsive to those commands today. Tonight will be a great hurdle for him to get through, breathing on his own with a face mask.
The MRI showed shearing of the left temporal lobe…. I don’t know how severe it is… haven’t been able to talk to the doctor about it. Right now the focus has been on managing the infection…. there’s nothing they can do about the shearing… that will come from rehab. So, he is currently off the ventilator and will hopefully remain so. His fever remains low at 99.1 so he is responding to the antibiotics. They may flush his lungs again tomorrow if he remains unconscious but able to breathe on his own. Time will tell.
I’m exhausted. Sorry I can’t say any more, except to thank you all for your love and prayers.
It looks like I was extubated and was able to breathe with only a mask now. I still did not wake up. My mom was told that even when unconscious, the brain still processes information. So, sitting next to my comatose brain and body, she began to think creatively about how she could ignite a spark in me. My mother and I have a special relationship because she showed me my first passion… and she knew how much music meant to me. In fact, my mother taught me the first song I ever learned on guitar: Blackbird by the Beatles.
So she has one of my friends bring one of my guitars to the hospital. she brings it into the hospital. And to the beat of the respirator that’s keeping me alive, she begins to sing, “Blackbird singing in the dead of night… Take these broken wings and learn to fly.”
Since waking from a coma, I was eventually steered towards a nutritional protocol. And it was after implementing this protocol that I began to regain some clarity. So I used that clarity to study everything I could to give myself the best shot to recover. I was relearning how to walk, so I wasn’t very mobile, but I was able to use this amazing resource that is the internet to listen to podcasts, to read articles, to watch videos, and to take online courses from top universities like Johns Hopkins, Cal Poly Tech, The University of Chicago, and Duke University. I was also able to reach out to researchers and practitioners around the globe, some of whom have become mentors, colleagues, and friends. I confided in, and continue to confide in, these practitioners and researchers for guidance.
I was cherry-picking courses and spending time with mentors to create my own major to understand how the brain works, how the brain learns, and how the brain is fueled so that my brain could recover as best as it could. I was studying (and I continue to study) like my life depends on it, because it does! Six and a half years after my injury, I published my first book, which is like the dissertation of the nutritional tools I have learned through my experience, research, and investment. I have been the keynote speaker for several large conferences. I have created two websites (AdventuresinBrainInjury.com and FeedaBrain.com), and an Interview Series, and a podcast where I interview some of the top brain and nutrition experts of our time. I walk. I talk. I eat. I cook. I live independently. I do backflips off of diving boards. I enjoy the eff of my life. And I partner with clients to empower them to choose their treatments, to work with their medical team, and to strategically align themselves to bring about the best possible outcome. To schedule a call with me, fill out this form.
Check out the Adventures in Brain Injury Podcast.
Check out the Feed a Brain Interview Series