Alexander’s Story

Site created on July 26, 2018

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- The following was written by Alex's Uncle Scot.
- Alex was born with a congenital heart disorder and went through a series of reconstructive operations before he was four to restructure his heart in a novel procedure first developed at Philadelphia Children's Hospital. The surgeries were performed at Boston Children's Hospital (currently ranked as the #1 Children's hospital by... US News & World Report).
- Alex has been a fun and slightly mischievous and sometimes rambunctious young man, but he was and is always caring and loving to those around him.
- As he entered adulthood he was very aware the time had come for the follow-up procedure that he would need to determine just where his heart stood and what would be needed to move forward. He took ownership of meeting with cardiologists and surgeons in Birmingham and determined he needed people who were better aware of the procedure he went through as a toddler. Ultimately he returned to his original doctor who is now Chief of Surgery at Boston Children's and who remembered Alex's case and welcomed him to return to Boston for the follow-up procedure. Alex did an excellent job asking all the difficult questions and choosing to continue with the procedure.
- The surgery went as planned and his recovery was moving well.
- As he was being moved to a step down unit from the CICU he suddenly collapsed and was immediately attended to by the fine staff at Boston Children's. Emergency surgery was performed in the ICU where it was determined that a chamber wall in his heart had ruptured and he was experiencing massive internal bleeding. The quick response saved his life. I think had he been anywhere else we would not be blessed to have him here today. He was placed into a medically induced coma for the next several days for acute observation and recovery. Yesterday, the process began of bringing him out of sedation for cognitive assessment. Unfortunately, on first attempt, my wonderful and strong nephew did not respond to any stimulus except for involuntary reflex responses. First thought is that blood clots may have entered into the brain and have cause some neurological trauma. A neurologist is assessing him and will confer with my brother and sister-in-law today.
- Much appreciation to  Alex's Uncle Scot for writing the previous sections: 
Due to many precautions such as reducing the body temperature to 93-94* they were able to prevent the development of blood clots following the trauma.  The brain did sustain numerous strokes caused by a lack of blood/oxygen during the trauma event.  The strokes have caused permanent damage to his vision, however it will be a while before we will know to what extent.  While stroke damaged areas can not be repaired the brain does find ways of redirecting information and relearning lost skills.  This is now the phase that we are entering.
- Post trauma accomplishments on separate days.
a). Opening his eye lids
b). Communicating by blinking his eyes.
c). Cognitive response with feet.
d). Tracking with head movement
e). Tracking with eye movement
Everyday his cognitive responses slowly step forward. It will be a while before we know the full impact. 
- There is still a lot of healing to continue and there is still a lot of setback risk

Newest Update

Journal entry by Paige Fague

ALEXANDER UPDATE: THREE MONTHS OUT: Today is October 19th. Three Months ago to the day Alex was headed to Boston Children’s Hospital(BCH) for his open heart surgery. His life would dramatically change following complications to this surgery.  It was a Thursday Morning and we walked from the Yawkey Family Housing to BCH. It was a walk I would make countless times during our month in Boston. The walk was not quite a mile but it would be the last time that Alex would walk this distance…. That is until TODAY! Yes Today!!!

Since we made it home I started a walk with Alex that I try to get him to do three times a day.  It started by just walking from his bedroom to our mailbox and back. Each week we increased the distance by one additional mailbox. Currently, we are out to 6 mailboxes and which is a little of a 1/10 of a mile. About once every few days or at least once a week we walk twice the distance.  Sometimes he uses his walker, sometimes he holds my hand while walking and sometimes he walks unaided. His progression has continued to amaze me. One day this past week he did the entire walk unaided except for one quick grab of my hand to steady himself.

Tonight we went out to Veterans Park in Alabaster, Alabama.  There was a race in progress that I had participated in the previous two years called The Endless Mile.  It’s a 48-Hour race where you run on a one mile paved course. Yes, you read that right. 48 hours covering a single mile over and over again. I actually placed 2nd overall last year logging in just a few steps shy of 140 miles. Honestly, I’ve been really bummed out about not being in this year’s race.  Sometimes in life you’ve got to make things happen, however, sometimes in life you really don’t need to make things happen. Right now just isn’t the time. However, I thought it would do us some good to get out of the house and see few folks as they are already 10+ hours into their journey. Plus the running community in Birmingham has been so supportive of our journey and it would be nice to go say hi and thanks to a few people.

   We get out of the car and Alex was opted to use his walker instead of the wheel chair. We headed over to see the race director and his wonder wife, David and MaryJo Tosch. Two of the most special people around. I told Alex on our way down that one of the runners is 80 year-old Jimmy Barnes, who is attempting to break the 48-hour record for his age group, 80-84, which is 137 miles. Yes, you are reading this correctly. Right as we get there Jimmy’s passing by and he  slows down enough to shake hands and wish us well. Alex and I start walking the path. A few more feet and Mike House greets us warmly. A few more feet and I see Jefery Previs who is just getting through with a 30 minute rest after logging 30+ miles. A bit farther and Sam Bartee runs past us and stops in her track and hugs me and tells Alex how excited she is to see him. Jeffery comes walking past us and Brayden, oh yeah I forgot to mention Brayden and Buster our lab are also with us.  Brayden suddenly decides that he is not going to let Jeffery pass him and he takes off. It’s the last we would see of Brayden for over an hour. We make it a ¼ mile and there is a swing on the side of the path and we sit on it and rest, swing and encourage the runners. We make it to our next stop that is about the ½ point and take another rest. I told Alex I had a name for the place we are sitting, its call “Base Camp”. It’s just a little bit of a hill but as the hours go by that little hill somehow grows.  About that time Lisa Booher comes by and just squeals. She is so excited to see Alex that she is just beside herself. She ask if she can take a selfie with us and then runs on. We get up from “Base Camp” and proceed downward which is somewhat steep and is met by and even steeper climb. It takes a lot to get make it to the top and I congratulate Alex on climbing “Little Everest” On the way down from Little Everest he gets frustrated with the walker and hands it to me. So I’m holding his hand with one hand, holding and folded walker and Busters leash with the other. At this point Alex is getting tired and his stability is really starting to wain.  We’ve got to make it down a hill, across a bridge and to a pavilion. Which we do at a very slow and a bit unsteady. We get to the pavilion and rest again. I explain to Alex that I want him to complete the lap but he could care less. All the good will, and praises and hugs and fist bumps and selfies have worn off and he’s just ready to get the hell out of dodge. We get up and slowly walk to the front and there is a short loop to the side that completes the mile but Alex is doen and he isn’t having any of it. Suddenly, low and behold one of my co-workers, Keith Cain, is there as part of one of the relay teams. Somewhere along the way Alex was either distracted or had a change of heart and started on the side loop. Our van is parked right close to the begging of the course and I am completely shocked when he doesn’t just go straight to the car but instead heads for the Start/Finish line.  When we get there is a group of people cheering him on as he completes the lap. The smile on his face is priceless. The time for our one mile lap, 90 minutes. A few moments later a runner stops to share with us what an inspiration Alex’s journey has been to him. It caps off the walk in the most wonderful way.

Three months to the day that I made Alex walk to his own open heart surgery, he walks his first full mile. While he’d not hesitate to tell you that he could care less about walking a mile, he can’t hide the pride that shines from within.

To BUTS, Birmingham, Ultra Trail Society, “THANK YOU” for all the incredible support you have shown. Thank You!!!

LORD, Thank You for today. It is easy to forget that it was just three months ago that our world was turned upside down. It’s so easy to forget that two months ago Alex could only stand up and pivot but had yet to really walk. It’s all too easy to forget that a month ago we were just trying to get to our mailbox and back. Lord, Thank You for everyone you utilized to give Alex and fighting chance, everyone you utilized to help him step forward.  Lord, could you take that feeling of walking across that finish line and pass it onto everyone that helped us get there? Amen

 
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