"Well, I'm Sorry!"

The sound of Brendan having a seizure woke me this morning at 5:30 a.m.  In my groggy confusion I couldn't think where the nurses call button was, so I flung the door open, told them I needed help, then got out of the way.  The monitors were started, his oxygen mask was placed, and the Rapid Response Team was called.  Within minutes the room was full of people (at least 12) all doing various jobs -- drawing blood, checking respiration, evaluating medicines taken, checking pupils-- and some of them were just staying out of the way. (Hard to do in a room that small.)

The Rapid Response Team is just what their name implies.  Each department (respiration, PICU, pharmacy, labs) sends a team member so whatever is needed won't have to be paged individually.  I must admit - I was impressed with how everyone worked together. The blood tests were done right in the room and printouts of results were handed out just minutes after Brendan's blood was drawn.

Brendan's seizure lasted about 2 minutes, and we were told he probably wouldn't wake up for hours, but he was responsive (although groggy) and helping us change his clothes and bedding just 15 minutes after it was all over.  (With chemo in his system, we have to make sure it doesn't get on his skin or it could cause some burning).  Then he went right back to sleep.

 The one glaring problem seemed to be low sodium levels (which can bring on seizures).  Brendan came in on Monday with sodium levels of 140 (normal is 135-145) and Tuesday morning his level was 126.  An MRI scan was scheduled, then later cancelled.  The decision was made to take Brendan down (from 4th floor ICS to 2nd floor PICU (Pediatric Intensive Care Unit)) where they could administer 3% sodium solution if necessary.  They can't do that on the "floor,"  it has to be given in PICU.  So there we went.

 The next question was if Brendan's sodium was being diluted with all the chemo fluids he was being given, or if the hormone that controls sodium levels was out of whack and his body was dumping sodium out of his system faster than they could pump it in.  Throughout the day they have given him different fluids with different levels of sodium.  His initial numbers dropped from 126 to 123.  They finally started giving him saline through his feeding tube.  Blood work is drawn every two hours and his levels this evening have finally risen to 127.  So far, they haven't given him the 3% saline solution, but have him on a maintenance solution.  They stopped the mannitol fluids from chemo that are diuretics, and have cancelled his chemo treatment for today.

 We will stay in PICU overnight and re-evaluate tomorrow.  Oncology is re-evaluating his chemo treatments and will decide if there is reason to change his regimen.  In looking back over Brendan's history, we noticed that his sodium levels had dropped after brain surgery (keeping us in PICU for 2 days) and again after his first round of chemo.  We had given Brendan doses of saline for 2 days after coming home that week.  While we are starting to see a pattern, even with low sodium counts, he had never had seizures before.  So it's kind of a game changer.

 I heard that seizures make you tired.  Well, Brendan slept pretty much all day.

 Sarah: After most of the day sleeping in the PICU--small, cramped rooms, crying babies, frequent nurse checks--Charlie finally woke up around 6 this evening. He asked why we were still in PICU and when we could go back up to the ICS (oncology) floor. We explained that his sodium levels were too low, and that the afternoon had been spent trying to get them up. He had been given multiple doses of sodium through his NG tube, and he wondered why that wasn't helping it. I said, "Well, unfortunately, you keep peeing it out." He immediately exclaimed, "Well I'm sorry!"
When he's on chemo, he's on a pretty strict peeing regimen. He has to be flushing all of the chemo drugs out of his body quickly, so a regular stream out is a good thing during chemo. But now...the poor kid just can't win! He thought that was pretty unfair of us.

Kerry:  Tonight was foot rubs and a few jokes before Brendan was nodding back to sleep.  Obviously, this was not what Brendan had planned today, and he was not happy about it.  I told him it was not what I had planned either.  But at least I get a "kind-of" bed tonight.  Better than the chair I slept in last time we were in PICU.  Thanks to the nurse who moved the fold-out bed over to my side of the room after the "room-mates" checked out this afternoon.