Hi Folks. Just a quick update to let you all know that Nathan is home. He actually came home late Friday night after I decided not to stick around with the night shift. As of my last blog entry, Nathan was having a lot more myoclonic seizures on day 3 of our experiment. We had added back one medication, and I was relieved that he had fallen into a deep sleep for the night. Well, Friday morning, he woke up and went into status grand mal seizures. It was very scary for awhile. After giving him high doses of valium, he calmed down and slept for a little bit (about 45 minutes). The neurologist then added back another med and adjusted his Vegus Nerve Stimulator to what is called 'rapid cycling'. That means that he went from getting 20 seconds electrical stimulation to the brain every 3 minutes to getting 15 seconds of electrical stimulation every 20 seconds.
Then he woke up, and began having status clonic seizures. The doctor added more drugs to get his brain to calm down. This experiement was about eliminating drugs, not adding. Ugghh. I can only say that when you are watching your child seize, you want nothing more than to stop it anyway possible. So, pumped full of drugs and now electrical brain stimulation every 15 seconds, Nathan decided to take another nap. The rest of the human population would have slept for days after all of that. Nathan woke up after 2 hours and resumed what I consider to be "just a crappy seizure day". That means it is not our favorite type of day but one that we are used to and know how to handle.
The neuro was leaving town for the weekend and wrote discharge orders to go home when we felt he was stable, yet offered to let Nathan stay the weekend given his instability. The night shift was not the most proficient, and his nurse was rather intimidated by his situation. The carbohydrates and miserable cot were wearing on me, so we packed up and went home at 10pm figuring that we can always call 911 if he went back into status seizures. The neuro also left me with a regimen of medication options should we not be able to stop a seizure with our usual means.
The happy ending here is that we stayed home all weekend, did not add any more meds, and his seizures have settled into typical crappy day seizures. It will take a couple weeks to work all the meds in and out of his system to see what his new baseline is. Until then...
4 comments:
Oh Tricia...I'm sorry the experiment didn't yield a better result. I'm happy you were able to be home for the weekend and that at least there is some stability to the level of siezures now....but that still does not make it any easier. I can only imagine how you feel as you watch your baby sieze...my only reference was watching my mother have the same kinds of siezures and it was soooo very difficult. I keep you and Nathan in my prayers constantly and hope that over the coming weeks you and the doctors will find a better solution for Nathan. Hugs.
Karaleen
Are you sure you don't want to be a pediatric nurse? You have more knowledge than most of them :O
I continue to pray for Nathan's physical health and for you and Jim I prayer for mental health. I love you and wish I lived near so that I could help out. Stay strong.
Tric,
You know things are bad when the regular "crappy seizure day" become a relief. I'm so sorry! I hope Nathan is still having "crappy" seizure amounts or LESS! Sending hugs and prayers,
Jayme
@Lori - I'm very sure I don't want to be a pediatric nurse because I would have to deal with people like me (LOL), not to mention other children's bodily fluids. I admire all of the wonderful nurses in the world (especially you). I just get frustrated when Nathan is not in the PICU and ends up with nurses that have never dealt with epilepsy or cerebral palsy -it's not their fault, just luck of the draw.
@ Karaleen - thank you always for your words of encouragement and kindness. I didn't realize that your mother had seizures - which must be why you always know the right words to make me feel better.
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