2009 - 2010 A Timeline
I like to journal for a variety of reasons. I have multiple journals for different subjects, and one thing journaling has always done for me is help me keep track of details.
I did not make baby books for my kids. Instead, I kept journals for each of them. Ryan’s is the sketchiest because he was born so close to the car accident, but those journals still matter. I can look back through them to keep facts straight, remember the details of special events, see how far we have come, see how overwhelming things really were, and recognize what God brought me — and all of us — through.
From time to time, I have used those journals to put together timelines. Sometimes, when I have done that, I have noticed patterns that helped me better understand something.
I am now going to create a timeline with the main focus on 2009–2010, when my son Alex was physically struggling so badly.
No one has endured Alex’s physical struggles except Alex himself. No one.
I am with him all the time, and even I do not know what it feels like to be in his position. I remind him, too, that he does not know what the view is like from mine. We each have our own journeys filled with struggles and triumphs.
I cannot speak for Alex about what he has gone through. But I can speak about what I have gone through and what I have watched him go through while standing beside him. Even then, no words could fully do the journey justice. Some things, no matter how hard I try to explain them, can only truly be understood if you witnessed them yourself.
I have often caught myself trying to remember what it felt like to be 10, 11, 12, 13, 14, or 15 years old, and how I might have handled some of what Alex had to face. But then I stop, because there is no way I could truly imagine it.
I describe 2009 as a year of intense learning — a year when I began to understand just how unpredictably and dramatically Alex’s autonomic system could respond.
One resident at Rainbow Babies and Children’s Hospital in Cleveland once said he was trying to describe Alex to a colleague and finally told them, “You have to experience him yourself.”
That is the best way I know how to explain much of what happened that year.
I will begin with January 2009.
Alex had surgery to implant a diaphragm pacer, which is essentially another form of mechanical ventilation, but one that is more natural, healthier, and, for Alex, potentially much better. I had been in contact with the team at University Hospitals Cleveland for about three years leading up to the minimally invasive outpatient surgery. That team included Dr. Raymond Onders and Mary Jo Elmo, whom I spoke with the most.
The surgery was a huge success, and it seemed as though we were heading into an exciting year.
Alex was the youngest person to receive the implant, and it became big news.
To me, it was overwhelming.
I was used to Alex’s ventilator tubing. If something broke, I knew how to change it. But with the diaphragm pacer, if a wire broke, I could not fix that. That was scary.
Alex recovered from the surgery, and we left the hospital to stay in a hotel. Because of a huge snowstorm, we ended up spending an extra day in Cleveland.
By the end of January, Alex was pacing without his ventilator very well.
Woohoo — he was going to be vent free.
Not so quick.
On February 2, 2009, Alex started struggling with his heart rate and oxygen levels. His heart rate would suddenly plummet, and his oxygen level would dip as well. That day, as I was getting him into bed, his heart rate dropped to 39 — and it may have actually gone lower before I saw the number.
What was going on?
I was in frequent contact with Dr. Onders because it seemed that whatever Alex was dealing with might somehow be related to the surgery he had just had. Looking back, it is easy to see things that were missed while we were in the middle of them.
For the next few days, Alex continued to struggle and was unable to get out of bed. Finally, on February 7, 2009, after trying to help me stabilize Alex over the phone, Dr. Onders suggested I take Alex to the hospital just to get an X-ray of his lungs.
I took Alex to the hospital, and that began what would become a nightmare.
We arrived at the hospital around 9:30 p.m. Alex spent the next eight hours in the emergency room with no food, no water, no entertainment, and lying on a hard gurney. I kept moving him as much as I could to try to prevent a pressure sore.
The medical staff began giving Alex heavy-duty IV antibiotics while refusing to call Dr. Onders, despite my repeated requests that they do so. The doctors admitted Alex for an infection, even though there was no proof of one. They also would not let him eat or drink. They tried to suggest that Alex was aspirating, even though he had successfully been eating and drinking for the three years prior to that visit.
Basically, they were shooting at whatever they could and then trying to prove whatever they had decided to shoot at.
It turned into a 16-day nightmare of a hospital stay.
I watched Alex go through torture.
I eventually wrote a four-page letter to the hospital’s quality assurance department. I will simply say that we no longer go to that hospital, and we have paperwork stating that if Alex somehow ends up there, he is to be transferred elsewhere.
My purpose in writing the letter was to try to prevent another person from having to go through what Alex went through.
I will also say this: it was the support staff who helped save Alex. Yes, save him.
The medical staff had been giving Alex a medication that he had an armband warning he was intolerant to. His documented reaction was respiratory distress, which he had been experiencing severely. It was a brave nurse and respiratory therapist who spoke up and became the voices that were finally listened to.
No medical professional should try to prove what they want to believe when the evidence is pointing in another direction — especially when doing so is placing the patient in danger.
During those 16 days, Alex lost his voice, had ringing in his ears, threw up, was told he might never eat by mouth again, and no infection was ever found.
It was the advice of a pharmacist that led me to have Alex’s lab results pulled. Those lab results, combined with the courage of the support staff, helped Alex survive.
Later, Dr. Onders, Mary Jo, and I would determine that Alex’s lungs had dried out from pacing too quickly. I will save the full explanation of what that means for another time.
Alex and I eventually got home, and he started to recover, but he still needed oxygen through his ventilator, which he normally did not require.
My other three children were still so young, and I had never been away from them for that length of time before. That separation was its own kind of pain layered on top of everything happening with Alex.
Alex did get better, but he was not able to pace the way he had before that episode. I remained in communication with Dr. Onders, who was also trying to understand why Alex was not able to transition to full-time pacing.
In May 2009, Alex seemed sick again. I had to use quite a bit of oxygen through his ventilator to help him feel comfortable breathing. Alex was started on an antibiotic to try to prevent another hospital visit.
Dr. Onders eventually decided to bring Alex into the PICU at Rainbow Babies and Children’s Hospital in Cleveland. With Alex in Cleveland, where the diaphragm pacing team was located, he could be evaluated, and the real issue could be figured out — or at least they could try.
It was during that stay that I saw how differently eyes trained in the same profession can see things, and how radically different their approaches can be.
It was also during that stay that we met Dr. Karen Lidsky, who became one of Alex’s primary doctors. That experience helped us decide that Cleveland was where Alex would go for the majority of his medical needs.
Alex spent about five days in the hospital that time and had a small procedure during the stay to help open his airway a little more.
As 2009 continued, Alex began to grow. As he grew, and because his muscles could not provide the support his spine needed to stay straight, his spine began to curve dramatically.
Dr. Onders recommended that Alex see Dr. George Thompson, an orthopedic surgeon in Cleveland who specializes in spinal fusion surgery.
In October 2009, Alex saw Dr. Thompson. During that visit, we learned that Alex’s spinal curve had gone from 50 degrees in February to 89 degrees — almost 90 degrees. His spine had collapsed.
Alex needed surgery.
We were both devastated.
We had so badly wanted to go to Kennedy Krieger in Baltimore. Alex had never been able to do any official rehabilitation, and Kennedy Krieger focuses on recovery through activity-based therapy. That trip would have to wait, and it is still waiting.
Alex and I grieved.
But surgery was what was needed.
Over the next two months leading up to surgery, Alex could not eat, could not sleep, had trouble sitting up, and started hallucinating. Looking back now, I can see that he had been doing some of those things throughout 2009, but they definitely became worse toward the end of the year.
By the time his surgery date came, Alex was begging to get it done. He was miserable.
On December 2, 2009, Alex underwent spinal fusion surgery.
His body was so fragile going into surgery. Because he had been unable to eat much, his weight had dropped to a gaunt 55 pounds after having been 75 pounds in February. He also had a grayish cast to him.
Since that surgery, I have told Alex that I wish I had known about the nutrition shakes he now drinks for breakfast because maybe I could have gotten him to drink those then. Alex told me he would not have been able to tolerate them.
So Alex went into surgery.
The fusion began at his C2 vertebra and went all the way down to his pelvis. The curve that had been nearly 90 degrees was greatly straightened. The surgery itself went well, although I would later find out that Alex’s blood pressure had been very difficult to maintain throughout the operation.
What no one expected was how dramatically Alex’s body would respond afterward.
Alex and I ended up spending the next 21 days in the PICU at Rainbow Babies and Children’s Hospital.
That time is incredibly difficult to reflect on and equally difficult to put into words. I do not know how to fully portray how challenging it was. Most people can expect to spend three to five days in the hospital after back surgery, just to put things into perspective.
During that PICU stay, Alex needed two pints of blood and potassium. He could not tolerate even intravenous nutrition, which contributed to skin breakdown and a sore on his tailbone — the first pressure sore he had ever had.
His blood pressure would skyrocket and then plummet.
He did not know who I was.
He could not sleep for three days straight.
His nerves went into overdrive, which resulted in him biting through his lip. We had to strap his lip outward to prevent further trauma or possible infection.
He became completely unresponsive after a dose of Tylenol with Codeine, which scared everyone. They thought he might have developed a brain bleed or had a stroke. And, of course, it happened very late at night.
He dumped — urinated out — any fluids they tried to give him through an IV until brilliant Dr. Lidsky, who hated to ever give up, figured out that Alex needed fluids given through his belly, the more natural way, instead of through his veins. When fluids were given artificially through IV, his body seemed to reject the extra fluid as a regulation response.
Alex became known as the “worst” kid medically in the PICU on many of those 21 days.
Alex and I had a few visitors during that time: my sister, my dear friend Wendy and her mom, a pastor and his son who came once about two weeks in but then never came again, and a friend who brought decorations to make the room feel a little festive for Christmas.
It was an incredibly tough time, a learning time, and an eye-opening time.
It was also the beginning of my deeper understanding that Alex’s care could not be understood through standard assumptions. His body had to be observed, learned, and respected.
