If you are ever in trouble, I’ll be there on the double

We are still at the hospital. Max is MUCH more lucid than he was during the week. They had to use some pretty big heavy hitters to get things to calm down. Max was sedated and very loopy. He was still having clusters twice a day and the seizures were looking worse than they looked at home. There was more arm involvement and then there started to be leg involvement. 

I had been speaking to every single attending, resident, fellow, and nurse that happened to come into our circle.  It was incredibly frustrating because it felt like nothing was getting done quickly or with any sort of urgency. Keep in mind this is the 3rd time we have been emergency admitted for clustering seizures. There have also been some major screw ups along the way. 

I had been talking to a resident about everything that had been going on and tearing up because we feel trapped. Nobody around us is familiar with the RNS. We can’t get Max stable enough to get a second opinion (believe me, we’ve been trying). I said, “I don’t know how to help him” and asked if she knew what it was like to be his mom and know she couldn’t protect him and  had to continue bringing him back to a hospital she didn’t trust to keep doing the same thing and living in some awful version of Groundhog’s Day. Max’s main doctor came in on the tail end of that and I was teary. She said, “oh mom, you seem upset. What’s wrong?” and I lost it. Not in  a crazy way but in a scary quiet rage talking way. I said: “ I am upset. We seem to be the only ones who have any sort of urgency about Max’s care here. We keep getting emergency admitted for the same seizures. He is worsening and not improving.” She said maybe I should sit down. I said, “No, I am not going to sit. I am going to stand and talk and you’re going to listen and then you’re going to start doing things to fix this.” I told her that she oversold us on the RNS. That it has become painfully clear that we were picked for this and that she is in over her head. I asked if she even had any other RNS patients. I said you led us to believe that you had done this before and all the success you experienced. If that is the case why is it that no nurses on the neuro floor know what to do with Max’s magnet? I said you are in over your head. She said that I could seek a second  opinion in Texas. I asked how exactly she proposed we get Max to Texas since I can’t even keep him safe grocery shopping in Plainfield. She said we were free to seek 2nd opinions if we were unhappy with our care here. I said if you think for even a second that we are here because we want to be you are out of your mind. We have been trying desperately to get 2nd and 3rd opinions but can’t keep him stable long enough to do so. She said she had presented him internationally and his care was at the forefront always. I said, yeah? You want to present THIS internationally? I’m sure they’d love to see how this is all playing out. And you don’t get to say his care is at the forefront of this. You are not the one afraid to put him to bed at night because he may seize during the night and not wake up. That’s his dad and me. You don’t have a 4 year old afraid to sleep in her own bed, you’re not the one waiting to see if school is calling EMS where you’ll inevitably get transferred to St. Joe’s and they will say they can’t help you with this and arrange transport and you end up back here. Max’s quality of life has degraded since surgery. We signed up for the same or better. This is not that for any of us. We cannot and will not do this any more.  So YOU are going to get us that 2nd opinion. YOU talk to Texas. Put your ego aside because this is about Max and not you. Get this in the hands of someone who knows what they are doing. Hand over every single piece of paper  you have on our son and talk to Texas because they HAVE been doing this in pediatric patients and fix this.. FIX him. There were several times she tried to tell me to sit down in there and say she’d come back when I was less upset. I never had to raise my voice but things finally started moving. I also launched an investigation through Patient Relations (again) and spoke to some other higher ups about sloppy record keeping (inaccurate medications in the system, having to keep a note on my phone of the color caps of Max’s tubes for labs because they’re never entered properly, etc.). I think there are some people who are afraid of me now which is ok by me. It never should have been allowed to snowball like this and it is not for lack of trying on my and Matt’s part. So much of this has been wrong.

Suddenly there is a whole team on this. They have CHOP and Texas Children’s Hospital both weighing in and looking at everything. Both those hospitals are in the top 5 for neurology and have much more experience with RNS in peds patients. They have had Max hooked up to a video EEG and have techs watching his brain live as any seizures come. They then take that data and match it up against the ECoGs (data generated by his RNS). They let a seizure play out all the way without intervention in a very controlled manner with emergency intervention nearby if needed. This would allow them to see exactly when the RNS detected the seizure, when it delivered stimulus and what it looked like in Max’s brain waves throughout.

By doing this and matching up the 2 sets of data, they were able to see that the seizure was being allowed to progress before being interrupted. Each one of the probes attached to Max’s RNS transmitter has multiple leads in it. Each one of those leads has the ability to be turned into a seizure detector or a seizure zapper. Through this mapping, they determined that the one being used to detect seizures needed to be closer to the seizure starting line. They made the adjustment Friday evening to switch those. 

Max is continuing to be weaned off the heavier meds that needed to be used to calm things down when he was in status. The seizures we have been seeing look much more  like his “blips” He is the most Max like I have seen. He very badly wants to go home and at one point told Matt he’d sell all his Lego if he could come home to me and Frankie. This one is hitting extra hard for us. We’re all tired of taking turns missing each other. Everything has been on hold as we watch for and wait for the next seizure for such a long time. I think things are moving in the right direction.