Reason to Dance, Reason for Hope
March 3, 2015
Topics: Riley Kid Story
As a Riley mom, I am so excited to be a part of a fundraiser for Riley Hospital for Children at IU Health called “Reason to Dance, Reason for Hope.” It's like Dancing with the Stars, where each contestant learns two ballroom dances to perform at a gala held at the Indiana Roof Ballroom on March 13. Please click here to purchase tickets and VOTE FOR ME!
My husband and I found out I was pregnant while I was starting my third year on the Pacemates, cheering for the Pacers. Landon was delivered by C-section after our doctor discovered thick meconium and noticed his heart decelerating during labor.
I quickly realized Landon was colicky. He screamed constantly all day every day. There was nothing I could do to stop his crying, so I usually would just cry with him. We did a lot of rocking all day long.
Landon developed a series of alarming problems that sent us back to the emergency room over and over. When he was three months old, Landon suddenly turned a hot pink color and had blisters all over his back. Our local emergency room referred us to a dermatologist, who told us it was an extreme form of eczema.
Landon’s breathing problems were worst when he slept or when he was sick. He was diagnosed with croup time and time again, and repeatedly put on steroid treatments. I was pulling many all-nighters, wondering if this was normal. Every time we would take him to the emergency room, usually in the middle of the night, he would be awake and happy and the ER doctors made me feel like a fool. I even started questioning myself.
At the age of one, he got a lot worse. Every night surrounding a sickness, I wondered if this would be the night I would lose him. He would fight sleep, and I believe he feared it. He sounded like an old man snoring. We tried everything: steam from a shower, elevating his bed, letting him sleep on me, cool mist vaporizer, taking him outside, sticking his head in the freezer - you name it. Nothing worked.
I even tried a sensor that goes under his mattress that alarms when they stop breathing. It would go off all through the night. I’m not sure how I functioned daily. I sat in the dark next to his bed, weeping, praying to God and watching him stretch his whole body and neck out to try to take his next breath.
Finally, my pediatrician referred us to Riley Pulmonology to see if asthma was part of the problem. I was shocked that they completely understood everything I was describing. They not only took me seriously, they took action! I felt heard, and finally prepared. They signed him up for a nebulizer and emergency breathing treatments. They also began referring me to other Riley specialists: an otolaryngologist (ENT) and an allergist. They ordered a sleep study, but Landon wasn’t able to sleep, so results weren’t conclusive.
The next time he was sick and had trouble breathing, I returned to my local emergency room, where the doctor scolded me, saying Landon was healthy and didn’t need to be in the ER. I brought him to the Riley Emergency Department, and that was the turning point for my son. They took us seriously, admitted him, and watched him for three days! His strong will kept him awake through that night, but by the next day he was starting to fall asleep in my arms. His Riley doctor just happened to be right outside the door (I call that God’s timing). He listened and watched, and instantly told me the problem was obstructed sleep apnea,” and they needed to surgically remove Landon’s adenoids.
Finally we had a diagnosis and a foreseeable fix. His surgery changed his life. He was cured!
Landon is now also seen by a Riley gastroenterologist, urologist, and an infectious disease specialist (for an auto immune disorder). Unfortunately for my son, there has been one small issue after another, but I have peace knowing that he is in the hands of the greatest specialists and in the hands of God. I feel so blessed to be so close to the greatest (in my book) children’s hospital there is. My daughter and 5-month-old baby have also been diagnosed as atopic and they see the Riley specialists as well.
I recommend Riley Hospital to anyone whose child has unexplained issues. Their specialists are extremely educated and do wonders for their patients. No matter what strange issues we were experiencing, they understood and had a correct diagnosis.
God bless Riley Hospital and its amazing workers.
comments powered by Disqus