Hey guys. Hope everybody's having a good weekend. We've been watching some things closely over last few days, concerned but not jumping to any conclusions. Last night and this morning we noticed some things and have been trying to figure out if its from the anti-seizure meds, low sodium, too much Taurine (I know, same stuff in Monster drink is in his Peptamen!!!) or what. Early this morning he was hiccuping and doing this thing with his mouth that he also did before seizure on the hem/onc floor before we ended up in PICU. We were this close to running him to ER. He thought he was in KY (grandpa and grandma's house) and was jumbling his words horribly. We were pretty freaked out. Yesterday, the meds zonked him out so bad, Eliz and I were discussing what we could do different to help him. Being too tired to talk is not an acceptable QOL (IE, change meds). When my son is too tired to even talk about Legos there is a problem. He just woke up and is acting fine. Although we haven't given him the VimPat or Keppra yet. Last night he got way worse AFTER giving his meds. Going to give them now. If we give them he could start seizing. If we don't (we always have per doctors orders) he could start seizing. Heck, the PI says these anti-seizure meds can cause seizures and seizure like s/e's. we just want him well. Like he was several days ago. There has been a slow decline over last few days. Somnolence and cognitive deficits. Please pray. Thank you.
Though it makes me nervous to do so, and is clearly beyond the scope of what I can actually know, I want to reiterate my comprehension of Nick and Elizabeth's understanding of their son's situation. I don't know them. All I know is what I read,
They know, the three of them, that he won't survive this recurrence of an aggressive brain and spine cancer.
They are fervent Christians, but normal people, parents to a dying, precocious child. There is dissonance.
They all want more time, but are aware of Quality of Life (QOL) issues, though there is a natural shifting of sand meeting water, there is a tide at work.
They are not being cruel by trying every thing they can think of, and all of it has the Joey Seal of Approval. I've no doubt, not one bit, that were Joey to say "stop," they will stop. The saddest, and probable, scenario is that he slips into some form of comatose state, as in this last crisis. Then, I hope, the doctors they have come to trust will guide them to letting him go.
I've no right to write these things... but I am, I have, and if it offends you, well... move along.
UPDATE 10/21/2012, 8 PM:
Saw some new symptoms. 3 hrs ago we made it up to I70 (headed to Riley) and talked ourselves out of it. Saw some new symptoms w/in last hour that really concerned us, we're at ER now. Promised I'd keep praying folks up to date. We sure appreciate it. Waiting to see ER doc.