It’s been a week since we returned from our latest stint in the hospital, and it’s been a productive return to say the least. Before I go into what we’ve been up to, I wanted to share my thoughts on our hospital stay and the last night at the hospital—both topics that have been weighing on me.
That last night at the hospital was, perhaps, the most grueling and frustrating of them all. Josh was seizure-free thanks to reverting back to his old meds, but that’s not to say he was resting comfortably. When I left off, I was told that Josh had to have his IV reinserted. After all that playing on the gym mat, Josh’s IV popped out and it was inherent to have it reinserted for the MRI the next morning. It took no less than six nurses who either tried to insert his IV or hold him down.
My sweet boy was asleep for several hours at this point, but I was told he just HAD to have his IV in at midnight. Nurse after nurse, not a single one could get follow through with this procedure that was making my child bleed and drench tears all over his sheets. They tried both hands, his arm and finally his leg, but no one had any luck.
After an hour of trying, Josh, once again cried so hard he fell asleep. Unfortunately, the misery didn’t end there. Josh’s night nurse noticed that his electrodes were displaced and falling off. Upon realizing that he completed the 24-hour EEG cycle, I thought it was ok for the electrodes to fall off on their own. Sadly, we got the news that the electrodes had to be put back on, even if it was 1am. So the abrasive tech that applied his initial electrodes with blasts from the oxygen tank to cement the glue to his head was back and stroking my unhappy babe’s head. For the next hour, I had to hold my kid down while the tech re-glued 20-something electrodes to my hysterical child’s head.
I asked—nay, BEGGED—why this had to be done if the 24 hour procedure had already be completed. “He must be having seizures still or something, mom. I’m just doing what I’m told.”
Yeah, and I’m just trying to console my tearful child when he should be resting.
She finally completed and rewrapped Josh’s head, and understandably, he was back to sleep and snoring in no time.
I fell asleep in my corner cot, not before tossing and turning, upset with guilt and frustration for my boy to endure these processes in the middle of the night. I understood that somethings are absolutely necessary, but looking back, I know that the pain my child endured that night were unnecessary.
I woke up to the neurologist peeking his head in the next morning. He asked to meet me in the media room to discuss Josh’s status and going forward. I sat in front of the neuro with my hair uncombed, remnants of eye makeup running down my face and bags for days. “Did I wake you?” he asked.
I laugh/cried inside.
“So, mom,” the dr. addressed me. “Joshua doesn’t look like he had any more seizures since we put him back on Dilantin. In fact, we’re going to go ahead and take off the electrodes and get him ready for the MRI at 10am.”
The dr. went on to tell me that Josh’s seizures are still coming from the same area where he’s always had them: front temporal lobe. This was good news in the sense that the seizures aren’t generating from anywhere else, and the drs know how to treat it. The bad news: the side effects are intense. In fact, Dilantin is known to cause gingivitis and can change the cerebellum, among other things. The dr. told me it can “change” the cerebellum. Upon further research, I found that longterm Dilantin use can cause long term memory loss, osteoporosis, balance issues and ultimately shrink the cerebellum. I felt absolutely ill after reading about these side effects from real longtime users.
A new EEG tech came in at 9am to remove Josh’s headgear. The man, whom Josh remembered from the day before, was gentle and kind, as if he had a toddler of his own at home. Josh took a liking to him and cooperated while the tech carefully removed all the electrodes. The tech told me each step before he proceeded, insisting that the chemical he was using would wash off in the bath. It smelled like paint thinner; the remover burned my eyes each time he squirted the little bottle onto Josh’s head, I couldn’t imagine how awful it felt to be doused with it.
I waited for a quiet moment to ask the tech why, exactly, was it necessary to have his fallen electrodes reattached at 1am last night. “It’s our job to maintain the integrity of the tests, so when we’re called at late hours of the night, we’re not often told the extent of the situation, just that we are responsible for keeping the tests online for accuracy.”
Fair enough, I thought, but still, what a waste of energy and resources. My level of anger at this point was channeling into visible frustration.
As a mom of a baby with epilepsy who already is having ongoing delays and balance issues, I feel stuck. I’m the one who schedules and then helps to endure each procedure, test and therapy appointment, I’m at a loss right now, not being able to find the magic answer for my boy. At the hospital, with the dr, with the pharmacy…over the course of the past few weeks, there have been so many misfires. Misfires that have hurt my kid, hospital and ER visits that could have been avoided. It makes me so fucking angry, but instead of lashing out more than I already am, I know that it would be in Josh’s favor to keep my head in the game and do what’s best for all of us.
So, here we are, a week later and I’ve been researching new neurologists, hospitals and alternative treatments. If this is a lifelong ordeal, I want the best answers now. That’s the very least my boy deserves.