We returned to the Children's Hospital on February 28th. We stayed for 15 days. During those two weeks Row had several more EEGs, a lumbar puncture, to test his spinal fluid for various genetic conditions, blood tests up the wazzoo and he went on and off of 6 medications, all of which had the potential to make him sleepy, listless, dizzy, and/or nauseous...in any combination. Despite all the drugs being maxed out in turn, his seizures continued. My husband and I counted each of Row's seizures and log them for the doctor and nurses, this could be dozens per day; most were one second or less but they come in clusters of 5-20 (later at home that number would grow to over a hundred per day). So we counted the number of seizures and the length of each one.
The worst part of this experience we the hours and hours of wondering, googling, and crying. (P.S. don't Google "Baby Seizures", it will never be a pleasant read) Our Pediatric Neurologist, the only one in the whole hospital system, would/could not give us any definitive answers the entire time we were there. Our numerous requests for a diagnosis were answered with vague claims that none could be made without the results of all the lousy blood tests that had been sent off to who-knows-where. So we were left alone to consult Dr. Internet, no matter how much we tried not to, we were desperate for answers, even terrible ones. So we read about horrible conditions and results for little ones with seizure syndromes, and we were frankly horrified.
So there we were, sitting in a hospital room, eating mediocre food, watching mediocre television, sleeping on deeply uncomfortable beds, wondering if these lame, feeble days were some of the last we'd be granted with our beautiful son. We didn't know if we would be dealing with a completely destructive condition that would leave him permanently incapacitated, or if he would even survive at all. No on would tell us! Near the end of our visit the doctor mentioned that we were running out of medications to try and that if we couldn't stop the seizure with these meds then his "last ditch effort" was to put him into a 48 hour medically induced COMA to give his brain enough rest to possibly stop the seizures for that time then to wake him up on a new medication to start fresh.
All I remember after that conversation was weeping uncontrollably. I grabbed my darling, with shaking hands, cradled him in my arms and rocked back and forth on a stiff chair sobbing and trembling, fearing that he would be taken from me forever...possibly the very next morning.
I hardly dare to make this statement, because I do not know the feeling of losing a child, and my heart breaks for those who do, but I feel like the anticipation of losing your child must be worse, somehow. If it's done, then it's done, and there is nothing you can do. It's over. If, however, you know (or think) it's coming, and are watching, helpless, it is pure torture.
It's the difference between falling onto the train tracks at just the wrong moment, and being tied to them for hours before the train comes. Anticipation. Horror.
Mercifully, we chose to forgo the coma option and asked simply to max out the medications he was on and give them a bit more time to work. Which was a great idea, because after a couple days his seizures decreased enough to allow us to go home.
So we took our meds, out lack of diagnosis, and our handsome man and went home, planning to seek a second opinion....
(*Parents out there: DO NOT feel like you have to listen to everything a doctor says. They are not gods. It is OK to seek other opinions and do your own research. Ask every question as many times as you need to. It's too important. Ultimately YOU decide what care your child gets, they can't just take your baby and carve them up without your consent, so the control truly is yours, don't be afraid to put your foot down*)
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