Recently, I attended a writer’s workshop for the writing mom. I had no idea that since I began this blog back in 2009, so so many moms have begun blogging. And so many do it so well. Who am I? I ask myself this question from time to time. And then I fail to write a blog post. Instead, I tend to spend my time researching my children’s medical issues so that I can be one of those much maligned, as of late, “educated moms” who medical doctors have to contend with these days. I remember once hearing my daughter’s Irish Dance teacher say that her job would be fantastic if it weren’t for the parents. I suspect many pediatric doctors these days are feeling the same way. Internet research can be dangerous but it can also be extremely useful. And then, being able to tap into the collective wisdom of fellow blogging moms (and getting their support)–well, that is just a wonderful blessing of the internet.
So I am not sure why I had never run across this article before, but last week I found the quintessential article on tympanoplasty surgery and yes, cholesteatoma. It is written by an ENT, but written for a lay audience. And he really gets how to write for a lay audience as well. After reading the article, I cried and cried. Because I finally understood–fully understood–the decision we made for J when we opted for his tympanoplasty. I also understood the extreme and rare miracle of his hearing being restored through the surgery. And, well, I understood the implications of cholesteatoma oh so much better. Every day this blog is visited by people looking for more information on Tympanoplasty and for those of you here for that reason, here is the link to that magnificent article by James Fairley. “Dr. Fairley, I will likely never meet you but I am forever grateful for your contribution to my knowledge base in an area where I need the most knowledge possible to make the best decisions for my son going forward.”
And so we met with our ENT this past Monday. He walked into the office and looked at the piece of notebook paper in my hand. The paper, front and back, was filled with questions. Some of them “if” “than” type of questions and so I had to proceed in order. It was a busy day in the office, in spite of the 50 below wind chill temperature outside, and he was already behind by 45 minutes. Yet, still he sat down and got comfortable when he saw my list of questions.
I told him, “I have some questions for you.”
He replied, “I can see that.”
Well, I have to hand it to him. He listened to and answered all of my questions and every last one of my clarifications. We left his office with the understanding that he would follow J’s ear for the next few months and we would delay a CT or MRI until either we cannot put it off any longer or the drainage pattern gives our ENT a better sense that we are looking at cholesteatoma. He agreed to using an MRI but said that there is risk in sedation of kids at this age too. He said, “But you guys are the parents. I just present the options and you get to decide.” So over the next few months, I will conduct research to help us weigh CT vs. an MRI; another brutal dose of radiation or yet another sedation.
After making my way through our list of questions, I did apologize a little for the inquisition. Our ENT responded, “You are his parents. You have a right to be concerned and ask questions.” And then he added, “Of course, you two might be a little more concerned than most but that’s okay.” I said, “Hey, I know–it’s not healthy but I am working on it.” I didn’t tell him that this tympanoplasty surgery has driven me to attend Al-anon when I haven’t lived with an alcoholic now for 13 years.
Chris said he had kind of fallen back in love with our ENT after seeing how he handled my questions. And I guess I did too. It felt like a small triumph. We were able to cancel the CT and wait a bit. We will have an actual choice between a CT and an MRI. And, at this time, there is no concrete reason to believe J has cholesteatoma. Well, I’ll take it.
But as it so often goes with J, one triumph (small as it was), is followed by upset. J had some not good blood results come back from his pediatrician’s office and I got the call about those the day after J was at the ENTs office. And so, on another 45 below windchill day, I was rushing J off to the nearest Children’s Hospital for more blood tests. His blood draw from the week earlier had been nothing short of disastrous and so I had his OT calling to talk to the lab director to prep them for J as we were walking in from the parking garage. They did everything right for his SPD issues, but the best tech they had couldn’t get blood from J. She said his veins were jumping around. J was traumatized and screaming but we let another tech try because the other option was to try to walk him back into the hospital the next day and try again (ugh, I don’t think so). She got the blood. And now we are waiting.
As I drove home with J yesterday from the blood draw, he stared blankly out the window, even though I was playing his favorite CD. He seemed completely defeated by the experience. Hurt, actually. Yes, in the physical way but in a deep emotional way too. I know that there are children out there, particularly those with cancer (I am continually encouraged and amazed by the mom blog ourlittlehazlenut.blogspot.com) who have endured far far more medical procedures than J. Still, I started crying silently on the drive home as I thought about the large number of stickers (I am certain more than 500 now) J has received after medical procedures. Just that day, the lab tech had given J four stickers and a can of bubbles because she felt so bad. She told us she was very experienced and had never had a blood draw go so poorly. She told J she’d have given him an iPad of his own, if she had had one to give. She said, “He is just so sweet and he tried so hard.” Yes, so sweet. So sweet. I will continue to question and seek the best answers and do all I can for my sweet little boy. And when I get a free moment, I’ll try to blog about any learnings that might be shared and prove valuable to other moms.