It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.
Bennett's Story Part 1: Ahead of His Time
Bennett's Story Part 2: The Calm Before
Bennett's Story Part 3: Shit? Meet the Fan
Bennett's Story Part 4: The Truth is IN There
Bennett's Story Part 5: Acthar the Terrible
Bennett's Story Part 6: Road to Nowhere?
Bennett's first stay in the hospital since those long three weeks in the NICU began on March 5, 2009, after receiving instructions to bring him to the hospital immediately following an EEG earlier that same day that revealed that he had a form of childhood epilepsy called 'Infantile Spasms'.
That very first night, a Thursday I believe it was, Bennett was hooked up to a new EEG monitor, this one to track what was going on inside his head over a 24-hour period. This included video monitoring. There wasn’t a whole lot either one of us could do for him except try to keep him comfortable.
Jennifer stayed with him overnight and I went home by myself so that I could be available for Carter. Though for some reason I still haven’t figured out, Carter ended up sleeping at Jen’s parents house. I think this was Jen at work…trying to protect me, offer me a chance to rest, to not freak out. She knew that my anxiety levels had been in a place where I had not needed to take medication for nearly 3 years. She could also see that the anxiety was starting to re-assert a physical hold on me.
The following day Dr. Neurologist #1 came to talk to Jen during rounds about Infantile Spasms and what to do next. I was not there. These Rounds were actually early that day and I didn’t get back up to the hospital until after 1 because of some stuff I needed to take care of for work. Dr. Neurologist #1 offered Jennifer a choice between Prednisone, an oral steroid, or something called ACTH. She called me about it and we talked about it and of course we chose the oral steroid, seemed less invasive and at the time we didn’t know a THING about Infantile Spasms, remember…we had JUST started to research when we got the call to take Bennett to the hospital.
I was at the hospital all afternoon and stayed with Bennett while Jen left to shower and nap and have some time for herself. Jen came back, we stayed with Bennett for a while in his room, but an MRI had been scheduled for this second night at the hospital, so we had to go down to where they kept the equipment.
An MRI requires you to remain very, very still. Even adults have a hard time with this. I have had two MRI’s in my life as an adult, and it requires Herculean effort to remain still. Plus, it is a scary thing to hear the thunderous sounds of that magnetic shit or whatever is going on in The Machine.
So they knew they were going to have to put Bennett under for the MRI, with a heavy drug. They gave him the injection, and I was having some real problems watching. The best way to describe it is that it started out like he was drunk, but then it just looked to me like it would look if he were dying. Once that thought worked its way into my head, I was beyond the point of pulling back the attack. It started to overtake me.
Chest getting tight. Breathing erratic. Eyes darting around. Walls closing in. Heartbeat racing. Lights getting brighter, darker, brighter, darker. Gotta sit down. Gotta get out of here. Room is too small. Gonna be trapped in here. Can’t focus. Can’t think straight. Lightheaded. Gonna pass out. Find a chair.
Jen helps me out of The Room, gets me into a chair, and helps me settle back down to a more rational state. After I was out of The Room, I actually started to ease back out of the feeling of passing out, and I could breathe easier. She tells me to go home if I am physically able to.
Dammit, IT was back, with full force. Thought I’d beaten it. Guess you never really beat PTSD and anxiety, you just manage it. She gave me a hug and told me to go home and get some sleep because I clearly needed it. At first I resisted, more out of a sense of embarrassment than anything else (I’ve always hated this mental liability and been embarrassed by it), but reasonable minds prevailed and I agreed to go.
I called Jen a little later, said goodnight. They were back in the hospital room and Bennett was sleeping off the drug, no issues with any kind of reaction to it. She was a bit short with me, and at first I thought maybe she was upset that I had left, maybe it was one of those ‘Woman Tests’ that your wives make you take and I had failed.
You know the kind I mean…the ‘Does this dress make me look fat?’ kind of thing or the 'You aren't really attracted to that kind of behavior from a woman are you?' kind of thing or the ‘No you don’t have to get me anything for Valentine’s Day’ kind of thing. I wondered if her telling me to go home was the type of thing where I was actually supposed to say ‘No way!’ and stay no matter what.
I couldn’t have been further from the truth. That night Jen knew something was up, something serious, with our son. She never spoke to me about it when I called to say goodnight, she did not call me later in the wee hours of the night/early morning, while she cried herself to sleep in the hospital room while holding Bennett in her arms. She did not want to disturb me or worry me since she knew there would be nothing I could do about it from home and she wanted me rested and able to beat off any panic attacks the next day.
But she knew that they found something on that MRI. She knew because she is a nurse, and has worked in the medical field her entire career. She knew because they ordered some kind of secondary procedure ‘on the fly’ that wasn’t originally planned for based on what they saw during the first pass on the MRI. She knew because she hid behind a door and heard two nurses whispering something like ‘No, the parents don’t know’, during a discussion about that MRI and the results. She knew because Mothers Know.
Upon my return to the hospital the next morning, she told me all of the above. Talk about feeling like shit. Again…her concern for my mental state forced her to keep that from me the night before. Note to self…do NOT forget to call that doctor and get your shit secure. I will not be a liability here...
I remember sitting there waiting for Rounds with her and suddenly THAT period of time became The Worst Part So Far. We had to try not to speculate on what they found, though Jennifer, because she deals with patients with Cancer in her day job, kept going to that place…brain tumor. We waited for several hours until the team of people (interns, residents, whatever you call them), led now by a DIFFERENT doctor (not the one from Thursday), whom I will call Dr. Neurologist #2, ended up in our room to tell us what was going on.
Dr. Neurologist #2 explained that after she reviewed the MRI she believed that Bennett’s Infantile Spasms were indeed just that, and that they were being caused by something called a Cortical Dysplasia. A Whatey Whaten? What the fuck is that? Well, the technical definition is this:
Cortical Dysplasia is a congenital abnormality where the neurons in an area of the brain failed to migrate in the proper formation in utero. Occasionally neurons will develop that are larger than normal in certain areas. This causes the signals sent through the neurons in these areas to misfire, which sends an incorrect signal. It is commonly found near the cerebral cortex and is associated with seizures and may be associated with some level of developmental delay(s). Focal Cortical Dysplasia is the most common cause of intractable epilepsy in children.
Please note that this new DOCTOR never explained it to me that well…she just said it was a lesion, that was her explanation. But that’s neither here nor there. Fine. Call it what you want to. It’s horrifically simplified to call it that, but whatever. You can read more about it on a basic level by looking to your right and clicking the link. But FCD is even MORE dense of a thing to understand than IS, so looking at multiple sites is probably a best bet. But even then be warned, it is not an easy thing to define, understand and, pardon the expression, wrap your brain around.
It's fuzzy, but I do not think I got any answers outright when I asked about whether or not it was fixable, but the Doc was straightforward in one regard. She wanted us to be aware of the magnitude of what Bennett was experiencing and to also make it clear that the NUMBER ONE goal right now was to get the seizures to stop. Period.
Now, Dr. Neuro #2 was curious and wanted to ask us about something…why did we opt to go with Prednisone instead of ACTH? Um…well, we were offered a choice by Dr. Neuro #1 and he did not say that ACTH was the option we SHOULD choose. We chose the less invasive one, we were not told one was better than the other. What the hell do we know? We aren’t the doctors here.
Dr. Neuro #2 ‘suggested’ we think more about it. She did not come out and say CHOOSE THE ACTH INSTEAD, though, and even when asked by one of us ‘What would you do?’, we got no answer. I get it…the medical profession is fucked by the legal profession and that is the way it is and is probably always going to be in this litigious country…but it pisses me off nonetheless.
One of the female interns/residents/young-doctors-in-training hands us some printed articles, with some stats she picked up from (where else?) the Internet. Some stuff was circled, notes written, basically (I presume) trying to draw us a map to ACTH without actually SAYING that this was the path we should be taking. We glanced at the paperwork, and agreed that we should probably switch to the ACTH treatment BUT…we wanted to take Bennett home first.
Everybody was fried, it would take time, several days in fact, to set it all up to actually get the medication and we didn’t want Bennett to be in the hospital for up to a week waiting for that to happen. And to be honest, it isn’t like we were getting any really solid info from the hospital. And not just because they were necessarily dodging any questions, it was mainly because we didn’t even know the right questions to ask.
We needed to get out of there, regroup, and think about stuff. So we ‘officially’ said no to starting the ACTH process that Saturday and wanted to get insurance clearance, make sure it was what we wanted after researching it more effectively. We’d gladly get it started later in the coming week if that was what we decided. Dr. Neuro #2 questioned this strategy a little (of course in a roundabout way, speaking in fragments), although I still do not get this part because Bennett would not GET the ACTH until next week anyway, why keep him in the hospital? But she seemed to question us, and I wasn’t sure if she just thought we were stupid or if she thought we didn’t care about our son…’Are you aware of how serious this is? Are you aware of the sense of urgency you need to have about this?’
Well, yeah, we are, but we need to get some answers and options and that isn’t going to happen in this room today. So we’ll see you in a few days. Bennett’s discharge from the hospital was put into motion, and we left early Saturday evening for home. I’m actually glad we took that stand. Mainly because very few of the side effects of ACTH had even been fully explained to us and we needed to get our heads cleared.
We needed to spend some time alone with our kids and each other and just 'be' for a couple of days. Not sure if that makes any sense at all to anybody who wasn't there, but it makes perfect sense to me.