Surgery and Seizures

Sunday evening we received a call around 8pm for my gastrointestinal surgeon. They had a slot open up Monday morning and asked if I could make it. Noel and I quickly made arrangements and rushed over to the hospital bright and early for placement of my gastro-jejunal (GJ) feeding tube. Due to the recent decline of motility throughout my digestive tract a feeding tube once again become necessary to receive proper nutrition. The placement of a tube is typically a quick procedure, patients either go home immediately post procedure or stay overnight if they are unfamiliar with tube feedings. I was scheduled to head home post surgery since I have vast experience with feeding tubes. However, things did not go as planned. The anesthesia team decided to add an inhaled anesthetic, Sevoflurane, as compared to only the IV anesthetic. Unfortunately, this drug in rare cases induces seizures. While coming out from GA I began to seize, Versed was given to stop the seizure but I began to seize again. Another higher dose of Versed was given and the seizure activity finally ended. I truly don't remember any of this, though I do vaguely remember hearing my name being yelled repeatedly while looking up at bright lights. Due to these seizures I was kept for observation and testing. A brain MRI, EEG, and full Neurological work up was performed. Luckily, the test concluded that I do not have any sort of chronic epilepsy, but did absolutely have two seizures induced by the anesthetic agent. I just wish my body would behave normally...

Pain from tube placement is horrific, especially after you wildly convulse post surgery. Since I have adverse reaction to most opioids, finding a cocktail to keep me comfortable was a serious struggle. I had two nights of wildly uncontrollable pain that left me howling and bawling... And let's not even start with the number of blown IVs I had in 48 hours. My veins are garbage. Thankfully I had incredible nurses who were so caring and sweet. Three days later, after being cleared by three hospitalist, the GI team, and Neurology, I was finally aloud home! Hopefully life with this tube goes smoother than the placement itself. It's been a hell of a few days.

All of this sort of doesn't feel real - It's like I am in a nightmare. I keep looking down at this tube thinking, "how the hell am I back here?!" It's so defeating to have come so far just to be dragged back. I know I will eventually adapt and conquer tubie life again, but right now it just feels like a kick to the teeth. Ya know? So please excuse me while I wallow and adjust for a bit. It's hard, frustrating, and incredibly overwhelming. Honestly, I am just angry. Angry at my disease for once again taking something that brings me so much joy: food.

A very wise young warrior who has experienced multiple relapses of her rare blood cancer told me recently, "Growth isn't always constant. Relapses happen. You are not back at square one. Your growth prior to relapse isn't erased. Take your time - don't be hard on yourself. You're going to get through this." Thank you Ali.