We felt totally helpless because his pain was so severe and he wouldn't let us touch him in anyway.
August 9, 2016 was a typical Tuesday for us. My 2-year-old son, Grayson, and I were home doing our regular mom and child routine: living life loving on each other, playing a game or two, learning something new, taking a nap, and fixing dinner while waiting for Daddy to get home. Little did we know that on August 10 our world would be turned upside down.
Grayson woke up around 8:00 that morning, with a bad bout of diarrhea and vomiting. My husband, Brent, and I just thought he’d caught a little bug, and so we weren’t particularly worried. When he suffered the same symptoms the next day, we kept him comfortable and figured he’d feel better soon, but decided to take him to the pediatrician just to be safe. There he was diagnosed with stomach flu.
Friday evening he got worse. He was feeling very uncomfortable and I could see that Grayson was in pain. We thought we’d see how the night would go and take him back to the pediatrician first thing Saturday morning. Later that evening, though, he was up with persistent pain—and then we noticed blood in his stool. Saturday morning we went to our pediatrician first thing and, with Grayson’s growing constellation of symptoms, were advised to head straight for Indiana University’s Riley North Hospital for Children in Carmel, near our home.
While at Riley North, they gave Grayson fluids, did chest and stomach X-rays/ultrasounds, took a stool sample, and tried to keep him comfortable. But our little guy was in serious pain. And the diarrhea was constant—all through the night Grayson was going every 10 minutes.
The doctors had a hard time determining a diagnosis. First we were told it could be intussusception, a condition in which the intestines fold into themselves and cut off blood supply to affected parts. Then, they said it may be Henoch-Schönlein Purpura, which causes inflammation of the blood vessels. With no definitive diagnosis, we watched our sick son get worse by the minute. Brent and I were extremely scared and frustrated.
On Sunday evening, we were transferred to Riley Hospital in Indianapolis where a pediatric surgical team would be ready to go if needed. Before we left, though, they did another ultrasound and discovered his appendix was enlarged.
Still in a great deal of pain, Grayson arrived at Riley Indianapolis where yet another ultrasound was done, only to discover that his appendix was NOT enlarged. Instead, we were told his colon was inflamed and colitis was the next diagnosis.
This was getting crazy. We were losing faith. And our little boy wasn’t getting better. Was colitis really the problem? Was there something else going on? We had so many questions and were worried sick.
Our worrying only intensified when they transferred us to the ICU. Grayson’s stomach was hardening, which made him very irritable. In fact, we felt totally helpless because his pain was so severe and he wouldn’t let us touch him in any way.
Next came another diagnosis: Hemolytic uremic syndrome (HUS), a serious, life-threatening kidney disease. At this time, we also got word from Riley North that his stool sample had tested positive for E. coli (and we later learned from our state’s board of health that it was a Shiga toxin-producing strain—one of the most deadly types).
Our hearts sank.
This time, they told us, they were certain that HUS due to E. coli was what Grayson was suffering with. His pain was so severe now, that multiple doses of strong medication didn’t even cut the pain. This was absolutely agonizing for us to see!
With HUS, Grayson’s kidneys weren’t functioning normally so dialysis was ordered for the following day (Monday), along with surgery first to put in a central line for dialysis. This would give his kidneys and body a chance to rest.
While we sat with our sweet Grayson on Sunday night, they inserted a nasogastric tube, which helped release tons of fluid and softened his tummy. After the fluids were released, we saw glimmers of hope when Grayson started to talk more and watch some YouTube videos. And his pain had decreased dramatically. We felt like we had finally turned the corner and figured Grayson would be getting better.
Next, doctors told us they wanted to sedate him and put in a breathing tube so Grayson could relax and rest before his surgery the next day. This seemed to be working wonders for some of his vitals—specifically blood pressure and heart rate, which had been extremely high (due to HUS). Once sedated, his blood pressure went down, his heart rate steadied, and his oxygen level was perfect.
But, after a few hours with the breathing tube in, his hemoglobin dropped from normal to nearly zero. And the doctors couldn’t get his heart to pump on its own.
Grayson’s life was hanging by a thread at this point.
20+ doctors and nurses descended around Grayson doing CPR for almost two hours.
But our precious baby boy was gone. They couldn’t save him.
On August 15, 2016 at 4:30 am after just five days of sickness and less than 10 hours in Riley Hospital’s pediatric ICU, Grayson passed away.
Unfortunately, we don’t know where Grayson contracted his E. coli infection.
It could have come from an animal or food, but we aren’t sure. In the days leading up to his illness, we visited our state fair where we were around animals, ate at a few restaurants, and enjoyed food prepared at our home, too. So, it’s very hard to say just where the infection originated.
From a personal perspective, I feel we did everything we could as far as food safety goes. I’ve always been very diligent about making sure all of us wash our hands after touching animals and that our food is handled and cooked safely at home.
But, tragically, even one little mishap somewhere along the line in the food industry can doom a darling baby like Grayson to his death.
Now, from a medical standpoint, looking back I see there are a few things that could have gone differently to help my Grayson have a better shot at living through this nightmare.
But, before I get into that, I want to say the medical team that cared for Grayson was one of the best. They were extremely caring people with huge hearts who cried with us when Grayson died. And, during the entire time he was treated at Riley Indianapolis, they never left his side. I truly feel that, based on the knowledge they had, they did everything they could to help Grayson.
Still … I’ve played it over in my mind a hundred times … could one thing in particular have made a difference and saved Grayson’s life? Because of the time it takes for a lab to process a stool sample, I wonder, if we had gone in right when the diarrhea started, and a stool sample was ordered sooner at the ER (or even the pediatrician’s office), would results coming in earlier have given us the chance to more quickly catch it, start him on dialysis, and give him more effective treatment?
I’ll never know, and when I think about these questions, they haunt me.
Going on without my child was the worst day I ever faced. The pain and suffering and heartache nearly ripped me to pieces. When Grayson passed away, I was 17 weeks pregnant with our second child, Graysie. She kept me focused, and truly kept me going, because I knew I had to be strong so I could continue to have a healthy pregnancy.
Even though the grief we felt was overwhelming and extremely hard on us every single day, one thing was certain: We never wanted Grayson to be forgotten. He had the most beautiful blonde hair and blue eyes and an infectious smile that could light up the room. Talking about him and sharing memories gives me strength and helps me feel that his passing had purpose. To that end, Brent and I have established the Grayson Dunham Foundation, so that our sweet boy’s legacy is carried on by supporting others through the hardships of HUS.