Here come bad news talking this and that

August 2, 2021

Silly faces with the strongest kiddo

Bad news is putting it lightly. Epilepsy has been kicking our butts this week. We stayed at Lurie’s Wednesday into Thursday because Max was continuing to have cluster seizures that were necessitating his rescue medication. Thursday morning Max had another cluster with more rescue medication. At this point,  he had clusters needing that intervention four out of five days and things were not any better. Matt was at the hospital with Max and I was home with Frankie. He called me and told me that the doctor was planning to potentially release them that evening. He and I were both uncomfortable with this. Max was in no better shape than when he had been admitted. Matt  and I were trading places that night and we told the doctor  about our misgivings and she agreed to keep him overnight again. We had gone up on his medication and continued the bridge but the clustering hadn’t stopped. I told her I wanted to wait until we had an improvement and some stability. We made it through the rest of Thursday and Friday morning with no seizures and they seemed pretty ready to release us.  It was mentioned on more than one occasion that they had a pretty full caseload of neuro kids. I still had misgivings and expressed this. They started filling out paperwork and I put in a call to Matt because he needed to come get us because they were pretty much pushing us out the door.

A wheelchair showed up and I let transport know that my husband wouldn’t be there for another 40 minutes or more because of the traffic from Nookapalooza (Frankieism). She told me, it was ok and that Max and I could just wait in the lobby. None of this sat great with me at all. 

Matt arrived, we got Max and all our stuff in the car and began driving home. Traffic was bad because of Lolla. About 40 minutes into the drive, Max goes into a seizure. I recline my seat and do some minivan parkour to get to him in the backseat. I am timing the seizure on our seizure app, swipe Max’s RNS with the magnet to mark this as a seizure and watch. Frankie is watching and asking if Maxie is going to need rescues. Matt is navigating traffic and finding a safe way for us to get off the expressway. Time is passing and the seizure isn’t stopping and in my gut I know we shouldn’t have been released. We find a parking lot of something, maybe some kind of industrial area. I am watching Max’s eyes roll back in his head and he’s not coming out of it and Frankie is watching me and she knows, without me saying anything and reaches out and takes my hand. We give Max his rescue medication and we watch him and watch the clock. I keep trying to ask him questions and he can’t answer me and the seizure won’t stop. I’m holding Frankie’s hand or she’s holding mine and rubbing Max’s face but it’s not stopping and time just keeps going. We’re in a position we’ve never been in before. We have a 15 minute window after rescues where Max might have little “aftershocks”. We’ve never needed that 15 minutes before but here we are, in a parking lot in a place I don’t know, where seemingly his rescues aren’t working. We move the car across the street to a forest preserve parking lot because it’s easier to see us. Matt calls 911 and they send an ambulance.

Max starts to come out of it. They load him in the ambulance and he’s scared. I climb in with him, and he has another seizure. I answer questions and the Medics check him out and tell Matt where to meet us. On the drive over, Max comes to enough to be annoyed by the noise of the sirens and say he doesn’t like the way they are driving. We unload at the hospital and there is a traffic jam of beds, no rooms available for us, they don’t have any sort of familiarity with focal seizures at all.  This is worst nightmare scenario.  We eventually get into a pod. I am trying to explain our whole situation to the nurse. Matt is en route to the hospital trying to get hold of anybody from Lurie’s and figure out what to do. Matt arrives but can’t come in because he has Frankie. The doctor eventually comes in and kind of examines Max. I hear the nurse yell across the ER, “I can’t , I got the kid who’s having seizures!” and I just can’t figure out how things got so much worse so quickly. The doctor and nurse trade places. The doctor comes back in and tells me he needs to do a better exam on Max because Lurie’s is asking him questions he can’t answer. I am trying to figure out if I can carry my son who is pretty much my height and deadweight at this point out to the car and get out of this nightmare. The Doctor comes in and tells me he has Lurie’s on the phone but they want to talk to both of us. I go into the room and the person who pushed for us to be released is on  speakerphone. She was very cavalier about the whole situation, I asked her if she had looked at Max’s chart at all, and reminded her that I thought this was a premature release and told her this was reckless,  dangerous, and completely preventable. I told her we should NOT have been sent home. He was no more stable than when we checked in, they had just succeeded in delaying the cluster until slightly later in the day. At this point Max had needed emergency intervention every day that week except one, only now things were seemingly worse because his rescues had a delayed effect. I was LIVID. She asked if I wanted her to arrange transport back to the hospital. I said yes. 

In the meantime, my mom came and took Frankie for us. They still didn’t want to let Matt in because they said one person per patient. I had to argue that we needed to communicate about what was happening and had no signal to call him. They bent the rules (or maybe the doctor was  a little afraid after witnessing my speaker call?) and let Matt come in. Matt stayed with Max and waited for their ambulance Uber to Lurie’s. 

I drove home and met my mom and Frankie (who I had barely seen). Nana took Frankie and Mabel for the night. I packed as quickly as I could for another hospital stay and drove back to Lurie’s to meet up with Matt and Max.

We’ve been here since! I have been in touch with higher ups about my feelings regarding the way things were handled here. Max clustered yesterday and needed rescues. We’re hanging out until we can see if his medication increase was enough to get things to cool down. Today’s breakthrough seizures looked more like our regular “blips”. Here’s to hoping for more blips and for things to calm down.

” Mama.. I’ve been miss miss miss miss miss miss miss miss miss.. is that a lot of misses? Missing you the most” That is a lot sweet girl, and doesn’t begin to cover it. Matt came up to hang with Max and Frankie and I got to play at a rad
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1 Comment
    1. Shameful treatment to a family that entrusted their child to Lurie’s for medical treatment tailored to an INDIVIDUAL, not a textbook

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