Quality of Life

This is not the post I hoped to share and it has taken me awhile to figure out what to say in the simplest form.  Why did we ever consider disconnecting the right hemisphere of Ayden's brain? Why did we ever decide to remove his right hemisphere? Why didn't we exhaust all of the other options first???

Quality of Life

When Ayden started seizing a few months after his stroke we increased the medicines he was on to control them. When the side effects were too harsh we switched meds and found some peace with where he was. We did this to stop the seizures, and offer the best quality of life. When the seizures increased and seemed to come from nowhere we spent a great deal of time "playing with meds". We have watched him regress and make gains only to lead back to baseline. We have always done EVERYTHING we can to offer Ayden the best quality of life. We will continue to offer Ayden every chance to make gains and we will do everything in our power to avoid regression.

When we met with the neurologist yesterday he said they were ready to send us home. They were confident that they had everything they needed to confirm that Ayden is seizing again. The movements/jerks we see are sharp spikes, but he also has small spikes happening in the background. When you have done all you can do, tried so hard, and battled for this long against "S" word it is not easy to except that the seizures have returned.

So now what? We wait... 
His seizures are not life threatening, they never have been. The times when his life has been in danger have been when the HSV flared or when he has had hydrocephalus/encephalitis. Knowing that those issues are not concerns right now, we wait. Our team at Cleveland will let us know what they think we should do. While we wait, we collect data that will answer the questions of how many seizures per day and if/when we see regressions. Currently, he seizes a handful of times each day and we have seen some minimal regression in gross motor.

Perspective

Before his first Hemispherectomy, Ayden spent a greater part of the day seizing, it became such the norm that we just calmly said "It's ok Bub" and waited for them to end. I don't want to get anywhere near that point again and hopefully those days are behind us. 

That is all we know. 

On a very bright note Bubba was elated to be at school today. After being stuck in the hospital for a few days with electrodes glued to your head you would be too! :)