Mikey’s Story | Systemic Onset Juvenile Idiopathic Arthritis | Rheumatology
We returned from a 2 week vacation that included a cruise, only to have our 6-year-old son Mikey come down with a slight fever the night we returned home. After spending a week consulting with his pediatrician and treating him for fever symptoms, his pediatrician asked that we bring him in again if his fever spikes or his breathing gets rough. We spent a long Friday night, as his breathing got rough. We met with his doctor first thing Saturday. His fever had spiked. She listened to his chest for a minute, then sent us straight to Connecticut Children’s Medical Center. We arrived very flustered and scared, with only Mikey’s favorite blanket with us, as we had expected to be prescribed antibiotics and be sent home from his doctor’s appointment.
From the very moment we entered Connecticut Children’s, we were welcomed with a smiling face and a “You must be Mikey!” We were sent into a private room in the emergency room area and the Connecticut Children’s staff began the long and arduous task of helping our son. Mikey was first stabilized and made comfortable in his emergency room. Thanks to the helpful staff member that brought him a donated toy, as well as the huge colorful wall mural, we were able to keep him fairly well distracted while we waited for some results. The nature of our son’s illness put us in contact with a multitude of different doctors throughout the day. After spending the day in the ER area, Mikey was admitted with symptoms including fever, pleural effusion and pericarditis, and there was no obvious reason why.
We were met by Nurse Karen upon arrival at MS6. She helped us all settle in and once we made it clear that we would only be leaving the hospital the way we came in, as a group, another bed was brought in for our comfort. The next 5 days were the hardest that I have ever lived through, as a team of doctors, led by Dr. Anand Sekaran, worked diligently to help our boy. I asked to be included in Mikey’s daily update when the team came around, as I was up all night researching whatever the day had brought us and I always had questions based on whatever results we were waiting for.
We met Dr. Nicholas Bennett from the Infectious Disease department, as infection seemed like a probable cause. After 3 days, once labs ruled this out, we met with the oncology folks to rule out lymphoma. The night of Mikey’s CT scan, I was surprised by Dr. Sekaran late in the evening. He had stayed late to wait for Mikey’s results so that he could fill us in before leaving for the day. He, as well as the nursing staff, had been attentive not only to our son, but also to my wife and I, and he knew that our sleep was very minimal. In an effort to ease our minds, he could not wait to tell us that Mikey was clean, with no lymphoma, in an attempt to give us some peace and get us better rested. I slept for more than an hour for the first time all week that night.
The next day, Dr. Sekaran and Dr. Heather Tory from Rheumatology, came to Mikey’s room to discuss the latest theory as to his condition. Since everything else had been ruled out thus far, process of elimination was pointing them to suspect Systemic onset juvenile idiopathic arthritis (SJIA), a rare autoimmune disorder. We were told that there was a new medication, called Kineret, on hand that works amazingly well for this condition, and that they would like to try this on Mikey. I got all the information that they had from them, read through it, consulted with my wife and, based on the low risk and potential high reward, we decided to allow them to try this treatment. Dr. Tory told us that if SJIA was the cause,we would see a turnaround in a matter of hours.
Mikey got his first injection on his fifth day at Connecticut Children’s on July 22 at around 8:00 PM and I assumed my usual nightly position in a chair in front of his monitor. I watched with incredible relief as first his respiratory rate and then his heart rate went down to normal levels. Then, for the first time in almost 2 weeks, his fever broke and stayed broke! We spent a few more days confirming that his symptoms were staying away, then we began plans for discharge and home treatment.
I cannot begin to express our gratitude to the staff at Connecticut Children’s Medical Center, at every level, for making our “visit” as comfortable as possible. My family spent 8 days on MS6, and it became clear to me that everyone was acutely aware that they are working with children.
From Drs. Sekaran and Tory, to the cleaning staff and volunteers, to the food worker who would start a fresh batch of fries for Mikey as soon as she saw me coming every day, to the liaison who got us badges when she saw our tattered name stickers that had been moved from shirt to shirt, we were shown a level of caring and compassion that brings me to tears every time I think about it.
This trying and difficult time resulted in a happy ending thanks to your staff. My wife, son and I stopped by, as visitors, to MS6 last week to thank everyone for all of their help and to tell them how we spent the rest of our summer that they helped us return to. Since our time with you, Mikey has started first grade and scouting and has continued playing on his little league team. Two days ago we celebrated his seventh birthday, and Connecticut Children’s was on our minds.
Thank you all so much for making our boy better. We do not know what we would have done without your team of true pros. These are the real heroes in the world. All at Connecticut Children’s should take tremendous pride in the service that they are providing to families in distress. I know I am proud of every one of them.
My sincere thanks and warm regards,
Michael Bourgoin, Sr.