Tuesday, August 27, 2013

One Year Ago Today

 One year ago today we headed to Bellevue so Owen could have an EEG. He had several EEG's as a newborn and one more after his 2 hour and 40 minute seizure. The one after the long seizure hadn't shown any seizure activity, but did show how doped up he was. He'd had at least eleven doses of at least 5 different types of medication to get the seizure under control. Since that time we had five different medications (or combos ) fail to control Owen's seizures.

 Our neurologist at the time was convinced that Owen was going to require brain surgery. before brain surgery can be considered however, several EEG's need to be done to make sure the seizures are coming from one area in the brain. Then they have to determine if that area is operable. So, off we went for the first EEG.
 Owen was experiencing a LOT of medical anxiety at that point in time, so even though we had been using an EEG play kit to prep him. I really didn't think he would cooperate with the process. We decided to do the test at the Bellevue clinic since Owen had never been there before and hopefully wouldn't be as scared. I still fully expected to come home after a failed attempt. Most of Owen's seizures occur when he is falling asleep, so they wanted him sleep deprived for the test. We had to wake him up 3 1/2 hours earlier than normal and then KEEP him awake on the ride to Bellevue. We allotted 5 hours(we usually allow 3 hours) for the trip and brought Cameron along to play with Owen in the car ( we also had 3 month old nursing Brenna with us). Every time Owen started falling asleep we would stop and let him run around until he woke back up. We finally arrived at the clinic 10 minutes early for our appointment with an Owen so tired he was falling over and couldn't walk.

 We decided that Rod would go back with Owen while I stayed in the lobby so I could nurse Brenna. As they started to go back to the testing room, I realized I had made a mistake. I'd only packed one diaper bag for both Owen and Brenna. We figured Brenna was more likely to need changed than Owen and that the clinic would provide supplies for Owen if he needed them badly. There was one problem with that line of thought. Owen's rescue meds were in the diaper bag and the clinic did NOT have a plan in place in case Owen went in to status epilepticus. I'm not sure why they didn't given Owen's history which was clearly labeled in his chart, but they didn't. I didn't think to ask specifically because I couldn't ( still can't) comprehend why they would purposely induce a seizure without having a means to stop it and I thought the chances of Owen actually letting them perform the test, let alone falling asleep on command were less than our chances of winning the Mega Millions lottery. I guess I should have bought a lottery ticket that day!

 About an hour had passed and Owen hadn't come back out, so I started thinking maybe he was cooperating after all. A few minutes later the technician came out and called for the parent of Owen. I went over to her immediately and she told me that they needed his rescue medication. I quickly loaded Brenna into the stroller and grabbed Cameron away from the Wii. I was pulling his rescue meds out of the bag and prepping the syringe while we walked down the hall. We got into the room and Owen was having one of the worst seizures I'd seen since the "bad" one. We're supposed to wait 4 minutes before administering the Diazapam, so I asked the technician how long the seizure had been going on, while Rod got Owen ready. She told me 14 minutes! I almost hit her. Seriously, I only restrained myself because the kids were there and Owen needed his medication IMMEDIATELY! Any seizure over 5 minutes is an emergency. There is no way someone can work in a neurology unit and not know that. I also found out later that it had actually been 18 minutes AND that the seizure had shown up on EEG for 5 minutes before visible shaking had occurred. That means that that woman let my son seize for 23 minutes without getting him help.

 While the technician went to get me, her supervisor had called 911 to transport us to the main campus of the hospital. Owen's seizure was just ending when the ambulance arrived. The supervisor was trying to take the electrodes off of Owen's head while the paramedics were trying to get him onto a stretcher. I remember being so angry that she was doing that instead of getting us to the hospital right away. I learned later that Owen had almost $1000 of gold on his head, although I still think we should have gotten to keep it. Their "mistake" has certainly cost us a lot more than $1000.
 I rode in the ambulance with Owen while Rod followed us in our van with the other kids. When Rod got to the hospital I was angry with him. I asked him why he hadn't done something sooner. He told me that he was holding Owen when he started seizing and there wasn't a safe place to set him down. The room only had a narrow exam table with no rails. Rod had asked the woman to get help 5 times and she kept telling him to wait a few minutes because she was getting important information and needed a few more minutes. Rod had finally gotten angry and maneuvered around enough to  reach the phone and call 911 himself when the technician finally called her supervisor in.
 We spent several hours in the emergency room before going home with another Anti-epileptic drug to add to the one he was currently taking. The doctors and nurses in the hospital are required to ask if you feel safe in your home as a part of domestic violence awareness ( I always find it interesting that they ask me that, but never ask Rod). When the intern came in and asked me if I felt safe at home, I blurted out "Safer than at the hospital, obviously". It wasn't until I saw the shock on her face that I figured out what she was really talking about.
 We finally got home around 11:00 that night. It took Owen 5 days to be able to walk with out looking like a drunk and a week and a half for his eyes to both look straight. On the newest medication we'd been on, Owen had only had one 4 minute seizure that had ended on it's own. After the incident last year, his seizures started coming every 3 to 14 days. They lasted 20 - 30 minutes. One time Owen stopped breathing for 5 minutes while I did rescue breathing and waited for the ambulance. Several times he needed oxygen afterward to get his pulse ox back up. He stopped being able to count, say his ABC's, and speak Spanish. His hand eye coordination regressed to the point where he could no longer put puzzles together (he knew where the pieces went, he just couldn't actually put them there) or thread beads.
 We eventually got an apology letter from the patient advocate from the hospital telling us how they gave the technician a good talking to about following protocol. She didn't get fired. She didn't get suspended. The hospital also told us that they couldn't get Owen in for more intensive testing for 4 more months. Even though their mistake made his condition so much worse.



  1. I am appalled by your experience.. Several of my children have had seizures (nothing like you're dealing with... minor stuff) and I would think anyone, especially someone working in a hospital.. would know that a seizure going on and on is a devastating event... an emergency. :( Is there a reason you haven't sued? I'm not someone who's quick to think "sue" but this situation seems like it might warrant it... especially given all the expenses you have with the new diet, etc.

    Thanks for sharing this part of your story.. I look forward to reading part 2. :)


  2. The short answer on why we haven't sued is that it isn't as easy as the media makes it sound. I'll probably do a separate post about explaining the "long" answer.