At long last we received the results from Jacob's EEG. Lisa, our palliative care nurse was the one to break the news, 'Jacob's EEG came back with spikes (seizures.)' Silence. Deep thoughts. Finally I was able to speak, 'That's what we were expecting but...' Silence. 'Thanks so much for the information, Lisa.' That pretty much ended our call. That’s all I needed to know...for a while. Lisa told me last Tuesday, but I had to sort out that info over the next week.
How to make sense of it? How could our boy be having seizures, but yet we see such positive signs? How could his brain be regressing, yet we see him progressing? Is his brain really not able to stop those seizures any more? Why didn't we see seizure before, considering one of the symtoms of PCH2 is seizure disorder? I'm thankful that we didn't though!!
My mom came with me last Friday to see our paediatrician to talk about the results in detail. He explained that Jacob had increased irregular brain activity, leading to seizures. Indeed a sign of the brain deteriorating. He prescribed a medication because last week he also had 2 seizures in one night. The first one was 40 minutes; the next was 1 hour 20 minutes. Jacob's history with seizure medications hasn't been a rosy one, so we'll see what happens with this med. It will take a couple weeks until he is at the full dose, so we won't have an accurate reading until then. Hopefully his body will be freed from the exhaustion and confusion which seizures produce.
Becky, our caring, sincere and thoughtful case manager called today to find out the results from our Dr Kerr trip on Friday. She is one who has had many ears filled with my wonderings, concerns, and questions. I love her patience and humor - when humor is needed:) She opened my eyes today to the reality that Jacob continues to go against the odds. He truly is continuing to write his own unique story. He does things which really perplex the medical field. He is a growing wonder.
On a very positive note, Jacob's feeds have been changed (for about the 27th time:) but this time it really seems to be in his favor. He's back up to being fed for 18 hours/day. This proves to be more of a challenge for us, because we are much more limited with him hooked up to a pump. His concentration is greatly reduced, which seems to work much better for him. He's hardly gagging/retching/vomiting now. For weeks, it was so bad, he could vomit every 5 minutes for hours on end :( Poor boy. With Jacob's condition, things continually change, but for the time being we are going to feast on him feeding well. The saying stands true 'Every cloud has a silver lining.'