And I’ll rise up, I’ll rise like the day

I’ll rise unafraid

I’ll rise up

And I’ll do it a thousand times again

And I’ll rise up

High like the waves

I’ll rise up

In spite of the ache

I’ll rise up

And I’ll do it a thousand times again

We’re still here.  They have been monitoring seizures and collecting data. We had to get into a groove and get Max’s nausea and puking under control. That seems better and he has seemed more like himself the past few days. It’s been a relief (to say the least) to see his big beautiful smile and hear him cracking jokes. 

 

 

He was experiencing A LOT of nausea and vomiting. They increased zofran and that seems to be helping. We were seeing LOTS of seizures ( maybe too many- Dr.Curry said dozens of seizure patterns ) He’s been a trooper. Personality wise,  he has seemed closer to himself the past few days and seizures  have looked similar to home ones.

 

We need one dominant or mostly dominant seizure pattern in order to be able to do something “big” surgically like a resection.

However, nothing is off the table yet and I’ve made it clear we’re ok staying the course and seeing what his brain tells us because we’ve done kneejerk and it doesn’t work. The last year and a half plus has been really hard for us. We’ve been waffling and it’s not sustainable. 

 

I’m not afraid of waiting for a pattern, or putting in more leads but I am afraid for him / independence in the future  if we don’t figure something out. He has so much ahead of him. He is this amazing kid WITH this giant seizure burden. He deserves the chance to figure out who he is with that lightened. 

 

 I’ve also told them if they need to send us home and comb through data and bring us back, I’m ok with that. We’ve waited a long time to get this team on Max’s case and we’re ok with trusting the process. 

 

The level of communication and care has been awesome. They are being very systematic in their approach and changing a single factor at a time in an effort to tease out the most dominant seizure pattern. We knew he was complex, we just didn’t realize HOW complex.  We’re grateful to have the team we have working on him. They have multi pronged options that may end up being options for us. Matt and I have always known that seizure freedom is probably not in our cards. But, even lessening Max’s seizure burden a little would make a difference in his quality of life.  Some of the options may end up being palliative and that’s ok. We know that they are taking Max’s case apart and figuring out the best solution for him right now.

 

They turned off his RNS a few days ago to see if there is a front runner of  patterns / common  starting point. Matt and I were looking forward to this. Our trouble really began with the implantation of the RNS . Whether correlation indicates causation in this case or not, we’re trying to see. The RNS can be great. However, the leads may not be in the best spot for Max or RNS may just not be for him. Since they turned off his RNS, we’ve continued a trend towards smaller seizures. However, we were improving before that, so they may at some point this week turn it back on to see if that brings back the bigger seizures. 

 

 Another night they also loaded him with Fosphenytoin ( and accidentally phenobarbital that was intended as a rescue) and essentially rebooted him to see what patterns rise to the top first. A case of the squeaky wheel is your dominant seizure pattern basically. 

 

They had a meeting this morning and are tentatively planning to put some more electrodes in his frontal lobe. They know there is a lot of firing in his left temporal lobe and have quite a lot of the 31 leads placed there. They’d like to see if there is something of note happening in his frontal lobe that may give them a more concrete idea of the best approach. The additional leads may be added today or tomorrow. Then additional monitoring will occur and they will see if there is a prevalent seizure pattern or seizure focus that could be resected, or ablated with laser.

 

If those are not on the table for us then they will possibly revise the probe placement on Max’s RNS and try to get that functioning in a better capacity for us. This would put us back to square one with the RNS learning patterns and hopefully work better than we feel it has for us so far.

 

They have also mentioned the VNS. This is another device used to treat seizures. It has been around much longer than the RNS. It works similarly to a pacemaker and is installed within the chest wall and attached to the vagus nerve. This is the least appealing to me. The VNS  doesn’t have a great track record and as you might imagine: if one medical device isn’t working for us, I’m not super keen to install another. I’ve expressed my feelings on this and they’ve been receptive. It’s also not appealing for Max to continue to have hundreds of seizures per day, and we’re working with one of the top neuro teams in the country so I am willing to listen to what they say. 

 

That’s where we’re at right now: collecting seizures, exhausted, missing our Frankie, and hoping really hard that some kind of dominant pattern emerges. We know we’re in the right place and we will do what we need to do because above anything else we do have hope and a belief that there is something better for Max and he deserves it more than anybody else I know.