Today was day 4 of the EEG study. Neither L nor N are completely seizure free.
N’s had reduced, we believe, with the Phenobarbital and Keppra. But the sub clinicals ARE still occurring. He’s starting to come out of the fog. This afternoon he was more responsive during his routine “care” cycles. We even saw him stretch, flex some fingers, and peek…just barely…and show us his eyes. He is now taking both of his orally, and is IV free again. If he remains stable for a few more hours, his EEG should be off soon. (Hopefully overnight)
L was having more seizures than N, and while they’ve reduced some, he is still having quite a few. They tried 4 different drugs, and at one point he was on 3 at once. Meanwhile, he is sooo sleepy. He is virtually knocked out from the combination, and even retained fluids and got very puffy over night. The versed was never a long-term solution. It has to be administered via IV. It also makes them too groggy, and can be unsafe for at home care in case they get so sluggish they stop breathing sufficiently. Regardless…it didn’t help anyway. Given all of the above, they took him off of the versed IV, and are going to use the next 24 hours to see how he reacts to being on just the Pheno and Keppra (both oral). If he does “ok”, or if the seizures remain controlled enough…they’ll continue with both as oral, and he, too, can get rid of his IV.
We knew that controlling seizures would be one of our biggest battles. It is the view of the neurology team that this may be as good as it gets seizure wise for these boys.
The dilemma for us as parents is that we don’t want to medicate the seizures away only to turn the boys in to lethargic, unresponsive (adorable) dolls. While we know the boys will have some limitations, and the seizures themselves are frightening, we will never know what the boys are capable of if we medicate them in to an unresponsive state. That will continue to be a battle. We want to medicate them enough to help reduce seizures. But we also want them alert enough to be themselves. What is enough?
Meanwhile, here are the day 14 pics. L doesn’t look like my L right now…but this is what day 14 brought us. Mama can NOT wait to get these boys EEG free and get back to snuggling.
“Enough” has been a recurring theme throughout this. I want to be strong enough. We want to do enough to give the boys the best chance we can. I want to be enough for K even though we know our new home life will be far more demanding. J and I want to remember to take care of our marriage, and be enough for each other.
One thing I have learned though, is that no matter how hard any particular day seems, there is always enough. Enough strength, enough support, enough grace, and enough hope to keep going. I feel like that is part of the promise God has given us. One day at a time. And He will continue to be enough.
2 Corinthians 12:9
My grace is sufficient for thee: for my strength is made perfect in weakness.