I've gone through all the emotions today. When I went to work this morning I was crabby and couldn't believe we were dealing with this again. Then it turned to anger...pissed off at the entire medical community and their failure to communicate with understanding. Finally, about 5 minutes ago, I reached defeat when I woke up from a nap and realized I have an insane to-do list and don't want to deal with any of it.
Today was one of those days I wish I could start over...
I called Dr. Koehn at 8 am with a few questions...1) why did the increase in the drug not prevent the 3 seizures we had that morning, 2) should I give him the Diastat as soon as the pharmacy has it available and 3) is this something that we are going to have to deal with FOREVER? I mean C'MON - isn't there anything that works? PLUS - these seizures came without a fever trigger...so what the heck triggered these?
I also called the pharmacy and they had the Diastat available so I ran there, picked it up, realized the script on the drug was not what I expected...dropped it off at Grammas, and went back to work, since we weren't sure if we should give it to him or not.
The script reads: "Use 5 MGs rectally as directed for seizures greater than 5 minutes in duration or more than 2 in one hour".
Okay - seriously...Mason's history of seizures has NEVER shown a seizure more than 5 minutes or had 2+ in one hour.
Finally, 3 hours later, Dr. Koehn's nurse called me back. I started crying on the phone with her, mostly out of desperation because my questions were not getting answered. Since Dr. Koehn was in her office, and I was probably scaring the crap out of the nurse with my emotional rantings, she put me through to Dr. Koehn directly. Below is our conversation addressing my concerns, not necessarily in the order above, but discussed nevertheless:
Question 2 - Dr. K: No, you should not give the Diastat...it is intented for seizures longer than 5 minutes or 2 seizures in an hour. Me: - what good does this do us? Dr K:Well, you could go back to the Lorazepam. Me: Are you speaking of the Lorazepam that was the potential cause of his intense 3 day unconsolable irritability? - No, not happening. Dr. K: Well, there is a 3rd option...there is a suspension Diazepam, the same drug used in the Diastat, that can be given through his G-tube when he has 2 or more seizures within 24 hours. Me: Seriously? How come you didn't tell me about this YESTERDAY? You know, when you saw us in the ER? *Words modified for drama*
Question 1 - Dr. K: His anti-seizure med can take up to 5 days for his body to have a new level that can fight off his breakthrough seizures. Me: 5 days???!!! WTF? Again, how come you did not tell me this yesterday? *Again, I changed words for emphasis, I am smart enough to know to not swear at a doctor*
Question 3 - Me: If Mason did not have a fever, why is he still getting these breakthrough seizures? Dr. K: Well, he is coming down with something, so perhaps any illness will cause a breakthrough seizure. Me: What illness? Dr. K: Oh you know, his ear infection. Me: What ear infection? You mean the slight redness in his right ear that wasn't even diagnosed by the ER doctor as an infection, but perhaps the start of one, so he started us on antibiotics just to be safe? Dr. K: Yes. Perhaps his ear infection caused the seizure. Me: SO, what you are telling me is even a slight redness in his ear, something we would never be aware of, can cause a breakthrough seizure? So, if he accidentally pricks his finger, do you think that would cause one? How about a headache, something else we would not be able to diagnose? UGH. I think this was another moment when defeat set it.
I learned today that I can NEVER assume. Never ever ever. I also realized that I need to have Mason's complete medical history with dates, times, amounts and everything else that could be considered relevant, easily accessible in my memory. Even in a moment consumed by stress, worry, anxiety and doubt...
The cherry to top my day off was when I realized that I forgot to pick up Mason's diazepam suspension drug before driving all the way to Gramma's to get him. Thankfully I have a very patient son and puppy, who didn't mind the extra drive up to Wausau before going home.
Hey Chris - You wanna make me a Brandy Old-Fashioned?! PUHLEASE?!
*Praying for a seizure-free night*
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