Thanks to Liz Ditz who sent me a link to what will surely become of one of my new favorite blogs because it reminded her of our situation.
I would encourage every parent of a special needs child to read and reread Mary’s post “Does Anybody Know Anything About This Kid” about the risks in emergency room for our kids. There was so much in her post that I considered pasting here to peak your interest to go to her blog. It is all very important.
Mary starts by saying that children with extraordinary health care issues are at risk when they go to emergency room. She hit the nail on the head with: “However, even those children who could benefit from ordinary emergency treatments are at risk from clinicians who don't understand the intricate complexities of their little individualized extra-ordinary lives.”
As I shared in Seeing the Light at the End of the Tunnel we went to the emergency room for what I would think was pretty common – appenditius.
Parenting Your Complex Child was in the hands of my editor by the time this situation occurred. With the strong encouragement of my editor we added the emergency room nightmere to my book. Here are excerpts from Chapter 13, Parenting Your Complex Child (AMACOM Books April 2006) :
“Doctors who see your child regularly know more about your child's credibility relative to pain. Emergency room doctors have seldom seen your child before. Your child may be sincerely in pain or simply be a complainer. You may be a parent who has good insight into your child or one that exaggerates. The doctor may have difficulty understanding the situation.”
“I could feel the anger welling up inside of me. Having had a similar experience before, where a different emergency room called the security guard at the first sign of anger, I knew I had to stay cool. I also knew that Billy Ray was more ill than I had ever experienced. I sensed that how I handled the next few minutes was a matter of life or death for my son.”
“After regrouping, I walked back into the emergency room and tried to establish some common ground with the doctor. I recognized that he had an emergency room full of patients and that Billy Ray was hard to diagnose because he couldn’t communicate what was going on with him. I explained to the doctor that there are two kinds of agitation Billy Ray exhibits; one when he has mental confusion and another when he is in pain. Finally, I told the doctor that a surgeon who had lanced a cyst on Billy Ray’s leg had stated that Billy Ray must have a high tolerance for pain in order to endure the pain of that cyst.
“Following our conversation, doctor ordered a CAT scan of Billy Ray’s abdomen, which showed an enlarged pancreas and appendicitis that was leaking bacteria into his abdomen. He also had some major gastritis and the beginnings of an ulcer. A surgeon was called in and Billy Ray was taken to emergency surgery late that Saturday night.”
I shutter to think that the result could have been different than bringing home 13 days later.
Reading Mary’s blog, I thought about a recent post Being the Eyes and Ears for Your Complex Special Needs Child and the case manager’s comments that not everyone has family who could be the eyes and ears for their complex child.
In Parenting Your Complex Child I give an example of a form I created to track Billy Ray’s medical, development and history treatment. This form was not given to the emergency room physician that night because we had just moved at the same time I was finishing the book. There was no time to dig for them in unpacked boxes. This history and the brief summaries I also do would have been helpful in demonstrating what I was trying to explain to the emergency physician. No he probably wouldn’t have had time to read in detail but I could have referred to them.
The documentation system can survive parents/family in being the eyes and ears for their complex child. The last chapter in Parenting Your Complex Child suggests ways to use the same visuals and documentation necessary for day to day life now as an estate planning tool.
This is one of those posts where I could go on and on but I hope you will use this post and Mary’s post to be prepared for emergency situations.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group