The picture on the right doesn't have anything to do with today's post. It is response to urging from several of your to add more pictures of Billy Ray's day to day activities. This is of him feeding Penny Lane in the mornings. He is messy but she cleans it up.
In today’s post, I want to expand on two previously covered topics because of email and phone calls from parents who are concerned about these issues.
Reading the signs our complex children give is always a challenge. Your instinct and skill at reading those signs is very important. When your “gut” that there is a problem is confirmed, a strange mixture of satisfaction at being right and sadness if it is means your child is ill. The most important thing to remember is to trust your gut even though sometimes it won’t be 100%.
On Saturday morning, Billy Ray had a major choking episode at breakfast. Throughout the day, his appetite increased drastically and as I feared so did his blood sugar. He was sleeping a lot as if he was getting sick but there were no apparent symptoms. Sunday his blood sugar was getting worse and he was not eating as much because all he wanted to do is sleep. Finally, called his medical provider, Brice Stanley, PA-C, on New Years night. I worried he might have aspiration pneumonia from the choking. It was one of those times that I did not know what was wrong but I knew that I knew something was wrong.
“Dr. Brice” (Billy Ray needs to call him doctor to understand his role even though he is a Physician Assistant) saw him this morning before clinic hours because he had a crazy schedule after the holiday. Billy Ray has an ear infection with bulge in his ear.
The relationship between your child’s medical provider and you as parents is very important. I have come to believe that listening skills and attitude are at least as important as education. The only medical provider I have ever fired was because he would neither allow me to verbally explain what was happening with my son nor read the documentation I prepared. He just kept prescribing more and more medications without enough information to make informed recommendations and without explaining side effects to us. That specialist had multiple degrees and certificates around his office.
When you have a provider who will listen to the differences your child experiences with various issues, you can accomplish so much better care and understanding. For example, the first question you are often asked when looking for infection of some type is does your child have a fever. Billy Ray has only experienced fevers following surgeries for internal bleeding and a leaking appendice. He has had infections doctors referred to as “raging” without any temperature. Some things the doctors just have to trust the parents about. Thus, the relationship must be strong.
I feel very fortunate that we have Brice Stanley. I am sure that he has never seen another child like Billy Ray but he is sharp in his medical skills and he listens well so he can use those skills to adapt to Billy Ray’s special needs. When I explain that certain behaviors are "signs" of certain things historically, he believes me and checks it out medically. He was there for us the night Billy Ray was taken back to surgery until he was out of surgery and somewhat stable (3 a.m. if I remember right).
Peggy Lou Morgan