Today you get a twofer as both yesterday and today's topics are about raising awareness in the medical community. Thankfully, most of our experiences have been very good, but there are three things in particular I would like to tell the medical community as a whole, if I could.
The first is that my daughter is already traumatized, she has had tubes stuck up her nose, and other places we won't mention, needles everywhere, pokes, prods, woken up with arms tied down, masks on her face and many other things that she never understood. Please don't do anything to make that worse. And if you are a doctor, nurse, MA, PA, NP, receptionist, custodian or anyone who works at a medical facility don't ever let someone pull a Bard Button out of a child without pain management. That five minute experience was likely the worst Naomi ever had, she's had more painful things done but the pain was managed. The Bard Button incident happened one November day. Naomi's first g-tube was a Bard Button which she had for six months to allow her stoma to heal. We were now going to switch it to a MicKey button that was lower profile and could be changed out at home. We went into the procedure room had an okay visit with our GI nurse practitioner who nearly reduced me to tears when she told me I had to get more volume into my constantly puking three year old. After that, she called in the GI doctor to switch her to a MicKey button. He looked at me and said "This is going to hurt a little." Well I was prepared, we'd done blood draws, injections, ng tubes, I had a book to distract her and Naomi lay on the table with her head in my lap while I held the book so she could see it but not her belly. The doctor pulled out a metal thing and stuck it into her button and pulled. Naomi let our an unearthly scream and he yelled at me to grad her hands which I did, he continued to pull and Naomi continued to scream, not the scream of a little girl but the scream of an injured animal. Twice the metal device he held slipped off the button and after about two or three endless minutes the Bard button popped out with stomach contents and blood all over me, the doctor, and Naomi and Naomi, the nurse practitioner and I in tears. Then I got a look at that thing. The tube part was the diameter of a pencil or 18 french to be exact, it was held in place by what looked like half of one of those bouncy balls you can get for a quarter out of the machines at the supermarket and it had just been pulled through an opening the size of a pencil. They give her an amnesiac before putting a mask over her face in the OR and didn't even suggest so much as Tylenol before this. Naomi continued to cry for nearly two hours after that procedure. That was the last time we ever went to that hospital. I hope no other child or adult has to go through that without pain management.
The second thing I'd like the medical community to know is that when it comes to questions about food, I need you to ask very specific pointed questions. Every time we go to the pulmonologist after we get her weight and height, o2, temp and blood pressure they ask their routine questions. How often does she need her inhalers? Have any of her medications changed? Any procedures/hospitalizations since the last visit? How is her eating? I do really well until the last one. I just don't know what to say. I don't know what they are asking. Is she meeting her nutritional needs? I think so. Is the tube feeding going well? No puke this week. Is she eating well orally? Well compared to last visit, yes, compared to her classmates, no. At the pediatrician they will ask me what type of milk she drinks and how much. I just stare, they stare back, I stare a little more and then finally say she doesn't drink milk and I want to follow that with it must say that a thousand times in her chart. If you want to know about her eating be specific and I can answer that but with general questions I don't know what to answer.
Finally the last thing I want them to know is my daughter is a little girl made up of many parts and they're all connected. She is not two ears, a nose and a throat, nor is she a GI tract, a brain and nerves, or a set of lungs and their airways. Please communicate with her other doctors, you accomplish so much more that way and LISTEN to her therapists, they have spent far more time with her than you have. She is a complete human being and even if you specialize in one area you need to see the picture as a whole, also as she ages she deserves a voice too, please talk to her even if she chooses not to respond.
I do want to close in saying we have met many clinicians, some we liked, some we didn't like and some we loved. I do truly believe that each one does want to make Naomi better and for that I am deeply grateful.