Kyle was a pediatric patient at Advocate Lutheran General Hospital before Advocate Children’s Hospital – Park Ridge was founded. After a lifetime struggle with respiratory issues, Kyle passed away at age 31. This is his story as told by his mom, Maureen, and his uncle, Bill.
Kyle’s relationship with Advocate Health Care started when he was born. He had a slight issue at delivery, but the team was able to clear his lungs and resolve it. My husband, Dave, and I took home a healthy 9 lb., 9 oz. beautiful baby boy.
Kyle’s pediatric care was through Suburban Pediatrics, mainly Drs. Michael Flynn and John Joyce. At six weeks old, Kyle developed respiratory syncytial virus (RSV) and was hospitalized at Advocate Lutheran General for a week and treated with ribavirin in an oxygen tent. He received excellent care from all the staff.
With a brother who also had RSV and asthma, Kyle’s story was written. He would begin the battle of infections and asthma that lasted his entire life.
At 18 months, Kyle had a tonsillectomy performed by Dr. Robert Miller at Advocate Lutheran General. He was the youngest patient to have this procedure at the hospital. He also was treated by Dr. Howard Melam for allergies and Dr. Prudy Krieger for immune deficiency. He had a great team of specialists that all worked together.
Shortly thereafter, Kyle began to have severe, sudden onset asthma. He made a few trips to the emergency department when the episodes became more than we could handle at home. Some of these led to hospitalizations.
By the age of 9, Kyle had medical bills that were over $500,000 (our insurance covered 80%). He was steroid-dependent and had had multiple surgeries by this point: tonsillectomy, two bronchoscopies and the insertion of a port-a-cath, which allowed his care team easy access to his veins.
The most memorable hospital stay for me was when Kyle was about 8. He was experiencing severe asthma. When we pulled up to the hospital, Kyle was using his portable nebulizer, and we tried to walk into the hospital. Kyle sat down about 500 feet from the door and said, “I can’t walk any further.”
I had to run and get a wheelchair and take him to the pediatrics unit, where they debated admitting him to the pediatric intensive care unit, but I begged them to try to avoid that, and they did. What couldn’t be avoided was high dose steroid treatments. These made it impossible for Kyle (and me) to sleep. Child Life specialists came in and gave us videos to watch. Kyle chose Jumanji, which was played over and over for 24 full hours. After the second viewing, I was over it, but fortunately it kept Kyle entertained throughout the long night and day.
They also brought in Nintendo (thankfully) to occupy his time until he was well enough to leave. Additionally, they gave him stuffed animals and coloring books. It was difficult for Kyle when he was an inpatient since the playroom was used for much needed pet therapy – which meant it was off limits to Kyle due to his allergies. It was great to have the support from Child Life that meant he, too, could have much needed entertainment for his stay.
After Kyle passed away at the way too young age of 31, we all strove to be grateful at his services and since then. “Grateful” also came from his love of the Grateful Dead. While I didn’t share his level of interest, I did enjoy some of their songs and am grateful for the reminder of Kyle anytime I hear one of their songs now.
‘Grateful’ is a word my nephew, Kyle, lived by. It seems odd for a young man, who as a child went through so many health issues, but he was always grateful for the excellent care he received from everyone at Advocate Lutheran General Hospital. He was grateful for the love of his family and friends, a circle that never stopped growing. He was always lending a hand or giving the last of his money to anyone who needed it, without question or expectation of anything in return. He gave away more glass art and jewelry he would make than he ever sold but never once complained about not making money on it.
My wife, Katy, and I wanted to find a way to share a little of Kyle and wanted to connect his love of art and also honor those who helped care for him through all those years of treatments, surgeries and doctor visits. We decided the best way would be to support the programs at Advocate that offer art and other activities for kids getting treatment there.
We reached out to development manager and discussed different possibilities. We determined that the Amazon registry which had needed supplies and toys would be a great way to help out from where we are in Florida.
Our first order was placed in time for what would have been Kyle’s 32nd birthday in December to answer a challenge his mom threw out for all of us to do something extra for his birthday. Seeing just how much is needed every day at Advocate, we decided to make it a monthly order for the next year. Each time we open the Amazon page with the listed needs, we scroll through and try to pick things, especially art related, that are used to keep the kids from getting bored.
Each month now begins with memories of Kyle as we go through the current needs and pick what we feel best honors Kyle’s memory while helping those going through what he endured for so many visits. We believe that Kyle’s spirit is with each item, helping the kids even more than the item itself.
How you can help
We are so grateful to Kyle’s family for their generous donation of toys and gifts for children battling illnesses or recovering from injuries at Advocate Children’s Hospital. Play is an important part of the healing process and can help make hospital stays and visits less scary for kids.