The Celebration of the Insane--we found a cause for the Blue Spells!
For one, it was very, very long. I cannot believe just this morning I rolled out of bed, put on scrubs and went to work. And told everyone Lily was doing great, and would be out of the hospital as soon as we could finagle it.
Well, since then Lily has had five seizures. And I can say seizure now, not "blue spell" or "episode" because we have confirmed seizures. She had her first seizure this morning before Zar and I got there, then another after Zar arrived, and then another while I was on my way up, having left work early, and then another, after being put on an EEG and c-pap but of course during the time the EEG was paused for adjustment...and finally, the last, which we caught on EEG and quickly confirmed was seizure activity. Which wasn't good news, I suppose, but not bad news either.
Prior to the confirmation we had ordered a DNR/DNI. Which means, we had decided that we didn't want a tube shoved down her throat, or her chest pounded on, if a blue spell was lasting too long and it looked like she wasn't going to pull through. That was rough. We felt like there was no reason to intubate, work to get extubated and then have her turn blue the next day and have there be nothing we could do. She was serious about the blue spells too, dropping to an oxygen saturation of 10 today while on c-pap. We hunkered down to wait for the next one, which we feared would be her last.
Then the docs came in with the news that there are storms in her brain, starting on the left and then traveling throughout, and once her brain gets overwhelmed, her heart rate and respiratory rate drops, her sats drop to nearly nothing, and then she has to fight to get back. Apparently she really wanted us to diagnose them, as this is the first time she has had so many so close together. Or at least that is how we are choosing to look at it.
We pulled the DNR/DNI to give her new meds a chance to work, to see if we can calm her storms. We had ice cream cups from the patient "nutrition" room to celebrate. (This was really more me...Zar had a harder time "celebrating") and we steeled ourselves for more PICU time than we originally anticipated.
Funny that a seizure diagnosis also brought hope.