Amanda came to see Jake yesterday & we finally took a family picture. Course, this was before the NCPAP was removed so we might have to take another one!
(click picture to see it larger)

Is this ride over yet? Jake is doing about the same. The NCPAP was replaced with Vapotherm on Saturday. Vapotherm, is a high flow nasal canula that works like the NCPAP, however, it's easier to maintain & doesn't sit on his nose like the NCPAP does.

He seems to be tolerating it. His seizures are not as controlled so over the last couple of days, his medications have been adjusted. He's still on Klonopin, Depakote & Keppra. While I was there today, he was having a seizure every 5 minutes. Some were brief, others were prolonged, lasting about 1-2 minutes. He's still having 'events' but is self recovering from them.

He doesn't seem comfortable to me at all. The pain I feel in my heart every time he seizes is indescribable. He has got to be so tired from having all these seizures. I'm just aching. I don't want to see him suffer any longer, but at the same time, I hate the thought of letting him go.

It's such a vicious cycle.

Overall Status: Stable with increased seizures
Visitors: Grandma & Grandpa (Saturday)
Dinner Provided By: The Newman Family