If you’re reading this, hopefully you have also seen Quentin Tarantino’s Kill Bill so you don’t think I’m a psychopath (and maybe you will anyway–I’m not, just a mom on a mission). If you haven’t seen it, let’s just say that Uma Thurman is a badass rise-from-the ashes and take no nonsense kind of gal. In the movies (Kill Bill Vol. 1-3), Bill tries and thinks he succeeds in killing Uma’a character, but she comes back smarter, more determined, and stronger than ever! Kill Bill Vol. 4 doesn’t stray from any of these ideals so I hope you enjoy my way of turning a terrible situation into something I can both laugh at and learn from. It is hard to separate myself from the anger and pain that I felt during this event because those feelings haven’t gone away. But I am choosing to take control of the story by talking about it and also laughing at it so the villain (clearly Bill) no longer holds any power of me.
Throughout Jack’s first six months of hospitalizations, he had over 10 EEGs because his epilepsy etiology was such a mystery. I became pretty comfortable taking care of a baby with dozens of wires + a heavy box that connected them coming out of his head. After the first 3, I had a system after the take off. The sticky glue stuff the techs use to make the leads stay is so hard to get out of hair and off the face! The EEGs techs were always so wonderful and would take their time trying to get the leads and glue off Jack’s head and out of his hair. It took a little while as you can imagine, especially since Jack did have some hair and his EEGs always stayed on 48-72 hours. The process was clear: when neuro said that the EEG could come off and put the order in, the nurse would call down to the EEG techs. The EEGs techs ALWAYS take off the EEG (ya know, because it’s literally their job). Unfortunately, this is where you meet Bill.
During Jack’s worst hospitalization ever, he was in the PICU and had a nurse named Bill. We were likely going to leave PICU and move to the neuro floor on this particular day and we were over the moon. Unless Jack needed help breathing, I hated being in PICU because the nurses were not as familiar with seizures as the neuro nurses were. Even though Jack was still having seizures, it was going to be a good day because we were leaving PICU!! –>Enter Bill. WORST DAY AND WORST MOM FAIL EVER! Jack’s team said the EEG could come off and then we could move to the floor. Woo Hoo! Except, the next thing I know Bill comes in the room in a huff and says that he is going to take Jack’s EEG off because he didn’t want to wait on the EEG team. I was still pretty new in the game, but I had a bad feeling and didn’t agree with Bill. I really thought he should wait for the tech, but I’m not a medical professional, just a scared mama, so I second guessed myself. I let it happen and I don’t know if I will ever forgive myself. In 30 seconds flat Bill ripped off an EEG that had been on my SEIZING infant son for a full 3 days! If your child has ever had an EEG then you probably want to throw up because I know did. My heart broke and fell to pieces on the floor; that has to be the reason that I didn’t speak up. I mean it happened so fast, but I should have tackled Bill…done anything to stop it!
Let me set the scene a little better. Since Jack was leaving PICU, his big sister had come to the hospital with their grandparents for a special visit. The last time Jack’s big sister had seen us, it was an emergency and Jack was being rushed to the hospital in status. Rowan was just 3.5 at the time so we really want to make this visit less frightening for her. Thus, while Bill was ripping the EEG off my son’s head, my husband was downstairs in the cafeteria taking his turn visiting with Rowan. The only saving grace is that I did not leave Jack’s side, but had decided my husband and I should take shifts visiting Rowan so Jack always had a watchful eye on him. I was utterly alone when this happened and have never felt so powerless. I silently watched someone who was supposed to be caring for my medically fragile infant inflict unnecessary pain on him, pain that would last for days. I stood there seething and wanting nothing more than to kill Bill. You can see the sores that Bill actions created below. SO I called my husband because I could barely think, speak, or function. Many a murder has been prevented on his watch (JUST KIDDING, but I am definitely the more outspoken & slightly unhinged one when it comes to our children). I was already planning where I should hide Bill’s body when my husband got back to the room and managed to calmly get us to the neuro floor while also telling Bill to stay the hell away from our son. Were we overreacting? I was still shaking and visibly upset. The second we got to Jack’s room on the neuro floor, there was a flood of nurses wondering what happened to his head. I didn’t want to talk about it. I was scared to implicate on of their own…what if caused other nurses to hate us or not want to take care of Jack? Snitches get stitches, right? Maybe this was the turning point, the defining day that made me forever want to speak out and speak out. One of the most amazing nurses urged me to tell her and I will be forever grateful that I didn’t stay silent about what happened. Before the day was over a legal representative was in our room and I realized that I wasn’t being an overprotective crazy mom, and that what happened to Jack was wrong!
Unpleasant testing is part of life with a serious medical condition. I can accept that and I can make my son endure them for the good of his health. BUT that does not mean that I have to stay silent and I hope no mama ever feels as helpless as I did above. I feel sad, ashamed, and sick about what happened to Jack. My only hope is that sharing this story will help other moms and their babies. It’s so important to remember that even when things are terrible, we still get to control our story. By sharing this I took Bill’s power away and I’ve made him into a sort of joke/lesson because it doesn’t hurt so bad when I approach it that way. Since our kiddos can’t advocate for themselves, we have to channel our own Uma Thurman ass-kicking selves so we can speak up and (metaphorically) KILL BILL.
Here’s a little EEG photo roundup for Epilepsy Awareness Month!! Sending love to all the warriors out there!