We have been fighting on behalf of our son since before he was born. When we moved to the Central Missouri area, we felt good about the fact we would be near good doctors and hospitals, and cut off four hours, or so, of our drive when we need to go to St. Louis. We quickly found a cardiologist that a friend in the medical field recommended and we felt good about that. Our first visit went well, even the head of the unit was in the room, helping to sing and distract Blaze from the echo, so we could get good images of his heart.
And then...things just started slipping. He wasn't getting echos/EKGs every visit, like we were used to doing. We thought maybe it was just because he had his last surgery and maybe the urgency for those tests weren't as needed. Blaze did have a sedated echo & EKG, but we had some serious concerns about the person administering his anesthesia. Things just didn't seem right with the set up. The last appointment Blaze had with them, we were going to have an echo & EKG. I was so relieved. I needed to know what was going on with his heart. And then...Blaze cried. The woman who came in to do the test asked him if she could do the EKG, she spoke softly with both of us, and because the four year old didn't want to do it....she refused to do an EKG on him. That was my limit. We began making arrangements to see another cardiologist.
The new cardiologist seems very thorough. He is out of Cardinal Glennon Children's Medical Center in St. Louis and comes to our area once a month. He was not satisfied with the performance of the echo machine when he saw Blaze, so he requested we go to St. Louis for Blaze to have a full work up. This means that we are switching hospitals for his cardiac care in St. Louis. We've always gone with Children's. It was hard. That hospital helped save Blaze's life. I struggled with that decision, but it did make it easier knowing Blaze's surgeon had left Children's, too, and gone to Cardinal Glennon.
With our appointment looming next week, I've been lighting a fire under our cardiologist office, in order to have his medical record released. It has not been a simple process. So I called yesterday to check on things, and casually asked if they were sending everything from Children's Hospital, too. I didn't want the new hospital to have too many duplicates. My world stopped for a bit when I heard the words, "We have a few things from there, but if your new doctor needs more, you can request information from Children's after that." I double checked, "Are you saying you only have a few things from Children's?" The answer was, "Yeah, again, if they need more, ask for the info then." I thanked her and hung up, and called Children's to start that process.
I felt like I had let Blaze down for a year and a half. Why his information never went from Children's to our cardiologist is beyond me. I realize they don't need every note ever written on the child, but they should have more info on him than "a few things." He's had 3 open heart surgeries and 3 heart caths. Thankfully, Blaze appears to be doing well. She really made our decision to switch doctors totally pain free and easy.
Parents, please, always listen to your instincts about medical issues. The Holy Spirit guides us constantly and you must be an advocate on your child's behalf. I didn't know to check if they had all of his medical records, I just assumed they did. Ask questions. It's better to be "that mom" than to live in regret.
"Whether you turn to the right or to the left, your ears will hear a voice behind you saying, 'This is the way, walk in it.'" Isaiah 30:21
So thankful we are now going in the right direction.
