I try to only write updates when things are looking up so I think this is a good time for another update.
Since my last update, things were looking really good. There were a few days in a row where Foster only had one seizure a day and we were being told that we would be able to go home at the end of that weekend. Most exciting news ever.
Then Sunday night, the night before we were planning to go home, Foster had seven seizures and required medical intervention to bring them to a stop. So discouraging. The same thing happened the following night as well. As discouraging as this was because we were so excited to bring Foster home, it would have been really stressful and frightening if we had been discharged and then this happened on our first night home.
Following these events some adjustments were made to his medications and once again the doctors felt that he was responding well and we were getting close to the right dosage. They decided to run another EEG to see what was going on in his brain. What they saw was again, a little discouraging. The medication hadn’t stopped his seizures, during his EEG the neurologists were able to see that he was having a sub-clinical seizure. These are events where his brain is seizing even though there are no physical signs, he just looked like he was sleeping. At this point, the particular seizure medication he was on was just about at the highest dose. This was Wednesday afternoon.
We left his EEG on for two more days to continue monitoring his brain on a new medication. From his EEG, they were able to see that all of his seizures were coming from the same place. Although they still cannot see what is causing these seizures in his MRI they decided to try out a different medication that responds well with these focal seizures, which are seizures that are focused is one area of the brain.
The good news so far is that he has been seizure free since they started this new medication on Wednesday (it’s Sunday now). His longest stretch ever! The medicine he’s on now though can only be given through I.V. and requires twice daily blood tests so it’s not practical for use outside of the hospital. It does show them that he is responding to this class of medication though. So now we’re in the process of switching him onto an oral medication which is different from the one he’s on but is of the same class. There is a good chance that he’ll respond well to this one as well and we’ll start to find this out early next week as he gets weaned off of the I.V. medication.
There aren’t any discussions about discharge happening yet, we’ll have to monitor the transition and then monitor how he is doing once he’s on the new medication, could be another week if things keep going well. But things are totally day by day here and I definitely learnt that after our last discharge didn’t happen.