Sonnie has our next guest blog post. Her story is incredible and well worth taking the time to read. You can find her blog at http://sonniehoots.blogspot.com/

Hello World…

My name is Sonnie, and I look in the mirror every day and consider myself blessed to be alive. By all accounts, I should be dead, and I was… let me explain…

October 25, 2013 was a Friday, and I spent the day at work like every other weekday. It was roughly 4:45 pm, and I was getting ready to leave work and go to the store to get some snacks for movie night with my Bunco friends. Suddenly my stomach started hurting. Not the kind of hurt where you go “um…ouch”, but the kind of hurt that makes you queasy and want to vomit. My first thought was, “I am never going to make it to the restroom in time,”
and in that thought the pain left my stomach and traveled up to my chest. My body went rigid and started to violently shake, and I absolutely could not move a muscle.

Something Was Very Wrong

I weakly called out to my co-worker, who was standing behind me at our front desk, for help. When he finally heard me, he came running over and asked what was wrong. I told him to call an ambulance. As he rushed off to call 9-1-1 our student worker came over and started rapid firing questions at me. As a med student, that was what he was studying for after all. Soon he went to get some other students to help him to put me on the floor. That was my
request for him and his fellow students… put me on the floor before I could break my neck by hitting my head too hard on the back of my chair.

By the time the ambulance arrived there was quite a crowd, and one of sweet ladies from the department next door volunteered to go to the hospital with me. The EMTs loaded me into the ambulance, and off we went to St. Paul Hospital, which was a block from my work. I happened to work for the medical university that ran the hospital. I tell you… I could have walked there faster than the ambulance did when all was said and done, well, except for the fact that I couldn’t move.

At the Hospital

At the hospital the doctor and nurses quickly tried to assess what had happened to me. EKG… nope, no heart attack. Chest X-Ray… nothing there. CT scan with dye contrast… well… that is when they sent a cardio thoracic surgeon to speak with me. Apparently I had dissected my aorta the entire length of my body, even into my legs. The inner layer of three had effectively ripped itself in half.

But they decided to put me in the CVICU (Cardio Vascular Intensive Care Unit) for observation. After all… aortic dissection is not necessarily fatal. My father and grandfather both died of aortic rupture, but that didn’t matter much, I guess. They were going to wait until morning to decide if they could manage me with medications or if they would do surgery.

My Death

My body had other ideas. I was in considerable pain, and in an effort to help manage that pain the doctor asked me what level I though my pain was. It’s at 9… No, it’s at 10… No, I can’t stand the pain any longer. Then I screamed at the man. It was such a blood curdling scream that the nurse said the entire ER stood still, and I fell back on the exam bed dead. That was the moment my aorta ruptured.

The doctor called Code Blue and started to try to rescue me. The doctor said the first thought that ran through his head was, “I’m not letting you go!” The nurse said hers was, “We are never getting this one back!” She later told me I was so blue that she didn’t think there was any way I could come back from that.

Miracles

They worked on me for 10 minutes, and pumped so much blood into me that they were finally able to bring me back from death. They had to use the AED 3 times to get my heart working. I had bled out 80%. After they were able to resuscitate me I was rushed off to surgery to place stents in my thoracic aorta. Once that surgery was completed, nearly my entire thoracic aorta was covered with 2 full stents. The artery to my left arm had been covered with part of one of those stents, effectively blocking blood flow to my left arm. Fortunately for me our bodies are so well designed that other blood vessels actually have grown larger over time helping my left arm to get nearly adequate blood flow.

Breathe a sigh of relief… that ordeal was over, but what was to come would prove to be just as hard. Over the next week there were several days that my life was hanging in the balance. My left lung collapsed and the blood that was in my chest cavity had to be drained. All 3 liters of it!! I cannot remember the week that followed my death but my family suffered much pain and trauma because of my aortic rupture.

Life-Altering Complications

One thing that soon became evident to the doctors was that I could no longer move the lower half of my body. I had
been paralyzed from the waist down because of the 10-minute lack of blood and oxygen to my spinal cord. They did a spinal tap in the hopes of getting the blood to flow back to the dead areas and reviving them, but it did not work. I was going to be unable to walk for the rest of my life. I suffered spinal cord ischemia or a spinal cord stroke, in other words.

The injury was later determined to be T-9 Asia A Complete, meaning that I was paralyzed from T-9 in my spine (this is a rough estimate since my spinal cord was not severed and I feel below T-9 in the front and cannot feel above T-9 in some places on my back). They initially were unable to do an MRI to discover the extent of the damage because I had become violent and would not be still for the test to be run. I had to be tethered to the bed because I tried to beat up the MRI technician.

I was also not responsive and would not cooperate when asked to do things or answer questions. It was at this point in the week that the doctors thought I may have had a stroke. Luckily my sister/best friend knew I had issues
with medications and begged the doctors to take me off the meds to see if it would help.

My Reaction to My New Life

Yes!! Success! As the meds wore off I slowly came back from the abyss and started acting like myself again. This is also the point in my ordeal where I started to grasp the situation and can recall what was happening. The doctors were amazed by my recovery, but then had the daunting task of telling me that I had been paralyzed because of my death.

By the grace of God I was not upset by that information. I was alive and knew that I shouldn’t be. Being paralyzed was not going to define me. I was going to live the life that God had so graciously given back to me.

Rehab

Fast forward to rehab… I had to learn to be me as a paraplegic. What a daunting task, and I am not going to say it was easy because it was far from easy. I had many ups and downs in rehab, suffered many setbacks and rejoiced in many triumphs that all lead to me eventually coming home.

Before I left rehab I had some odd swelling issues that the doctors could not figure out. It turned out to be Heterotopic Ossification (the abnormal or atypical growth of bone outside of the skeleton), which is a common issue for spinal cord injury patients, brain injury patients and burn victims.

During the period of time that the doctor spent trying to figure out what was going on, I met with a rheumatologist who told me he thought that based on my story I may have a rare genetic disorder that he knew of. A consult with a
geneticist was made and she proceeded to do blood work to see if they could determine what I had. Since my father and grandfather both died from aortic rupture, the doctors decided that a full genetic panel was in order. The blood was drawn in December before I left the hospital, and the results were back mid April of 2014.

The Diagnosis

My geneticist told me she was surprised by the results. I didn’t have hardly any of the characteristics that they look for with this particular disorder. I bruise easily and have thin lips, but wasn’t born with a club foot, don’t have such thin skin that you can see the blood vessels clearly on my chest, my hands don’t look like the hands of someone much older than me, my nose is not particularly thin nor do I have a small chin or protruding eyes.

But the diagnosis was clear and the tests showed that I have vascular Ehlers-Danlos Syndrome, a rare and deadly genetic disorder. Upon discovering that it is considered an autosomal dominant disorder (meaning that there is a 50% chance of passing this to each child born of someone who has it), I decided my whole family related to my grandfather would need to be tested. My grandfather was a spontaneous mutation and the lab said that they had never seen our mutation before. At that time there were roughly 40 known mutations and ours had never been recorded before, so we were a whole new mutation.

Since that time most of my family has been tested, and a very high number of us have it. Of the 16 of us directly related to and including my grandfather, there are 9 confirmed cases, Four confirmed to not have it, and 3 who have not been tested (but I have a very strong suspicion that one of these does in fact have the disorder).

Things Have Been Difficult

Since my death my life has been very difficult, but there is much rejoicing and love in my life. I am so completely blessed to just simply be alive that that is what I try to focus on as much as possible. Is being paralyzed after being able bodied for 44 years of your life difficult and trying? Indeed it is, but I would much rather have my legs taken than to have my mind taken or even my very life taken.

I have been blessed to have so many wonderful people in my life to help me through this unexpected journey that I cannot even begin to tell you all the blessings I have encountered. I like to tell people that if I told you all the
horrible things that have happened to me since my death (like being bitten by a brown recluse spider on my leg shortly after coming home from rehab) you wouldn’t believe me. Surely not that many bad things can happen to a person, just not possible.

 

 

Incredible Blessings Despite the Difficulty

But on the other hand, if I told you all the blessings you would think me equally a liar because no one can
encounter that many blessings and amazing people in one lifetime!! God had blessed me richly with friends who lift me up when I am down, cry with me, laugh with me and rejoice with me when I triumph.

Over the course of the last 6 years I have been jobless most of the time. We have never gone without food, shelter, transportation, heat or air conditioner (in Texas, that is a huge deal all in itself). I have never gotten too far behind on bills, yes they mount up and it is hard to not have debt in this kind of situation, but I am not being evicted
or starving.

This journey will continue to be difficult, that is just the nature of my life now. Every day may not be a good one, but there IS good in every day.

Thank you for reading my story and please never forget to tell the ones you love how you feel. You may never get another chance, like I did. May God bless you richly with love, laughter and joy!