Hearts Beating

What's this?  

It's Brendan's mobile heart monitor.  When he changes rooms he's hooked up to it and it rides along on the bed with him so he's always being monitored. 

 What are all those lines going up and down?  

Brendan getting his heart beating faster (by wiggling, moving his arms and legs back and forth, etc), then holding his breath to see how much he can change the numbers, and how squiggly he can get the lines to go. 

But really, this could have been my heart today.  So many ups and downs.  

Getting to sleep last night was quite a chore.  Brendan was up and down to the bathroom several times.  Getting him unhooked from monitors and IV lines and then hooked back up again is a time consuming task. Usually, during the night, we just have Brendan use the urinal.  Well, about 2 a.m., as he was handing his urinal to the nurse, it bumped the side of the bed and a small amount spilled onto the tile floor.  No big deal?  It is when you've just had chemo.  There are protocols for hazardous material spills.  At 2 a.m. we had to review them and clean it up with special wipes.

Sometime during the night, with lights on and babies crying and nurses coming in and out, I finally fell asleep.  For 3 hours I slept hard.  Exhaustion finally caught up with me.  I knew I had been out when I opened my eyes at 5 a.m. and noticed that Brendan had an oxygen mask near his face and I could hear the oxygen flowing.  Then I vaguely remembered hearing the nurse ask Brendan to take some deep breaths.  (Not uncommon for Brendan, when he sleeps very deeply, to start breathing really slowly.  And when he curls his head forward and off the pillow, he doesn't take very deep breaths and the alarms on his monitors start going off.) 

When I woke up this morning, the child-life expert was coming around to each of the rooms handing out things to the kids that they could use to spice up their rooms.  Brendan was given a small basketball signed by some of the Jazz basketball players and a BYU pillowcase.

Brendan slept great until about 9 a.m. when he woke up and wanted to know why he was still in PICU.  He let his nurse know he really wanted to get back to the 4th floor.  He was told he could when his sodium levels were regulated and they found out what the problem was.

His sodium counts slowly went up overnight from 127 to 132.  Then they dropped back to 129.  Then they jumped to 136.  We were skeptical of the big jump, but 4 hours later it was still at 136.  Speculation went on all day about why the sodium levels were so low.  Cisplatin can cause a drop in levels and has done it to Brendan before.  It just didn't cause seizures.  Thoughts ranged from thyroid (not working right due to radiation) to the gland in the forehead above the temple (that regulates the hormone that controls sodium levels) being cut during the craniotomy.  There is a lot of sodium in his urine, but low sodium in his blood. So he is "sodium dumping." They are bringing up his sodium levels by giving him doses of sodium solution through his feeding tube.  They don't want to bring levels up too rapidly (no more than 12 points in 24 hours).  Too much sodium in the brain can cause swelling on the brain -- and we don't want that!

At 1 p.m. today Brendan was moved out of PICU and back to ICS on the 4th floor.

Loren and Jamie met us there and helped us move all of our stuff.

Brendan showed Loren how he can change the numbers on the heart monitor.

Loren acted as Brendan's IV pole so he could use the bathroom without having to drag the pole across the room.

I think Brendan ended up beating Loren and Jamie in a game of Star Wars Monopoly.

After being in PICU, Brendan earned more beads for his "Colors of Courage" strand.

He will have to figure out if there is enough room for all 33 glow-in-the-dark beads he earned for 33 days of radiation.

When we got ready to leave Brendan, he was tired and not feeling well.  I got word tonight that Brendan started with a low fever and has tested positive for C Diff again.  And if he needed one more problem, no blood was coming through his port.  It looked like they were going to have to unblock it and re-access his port.  (When I talked to Brendan later, he said another nurse had been able to come in, thump-thump-thump on it (Brendan's description), and get the blood flowing again.)

Right now the doctors are planning to continue with chemo treatments first thing in the morning and monitor the sodium very, very carefully.  They will also evaluate the amount of fluids he is getting so we make sure we don't get his balances off so much this time.  Brendan is anxious to get his chemo treatments done so he can come home.  The doctors were a little surprised he was so anxious to get going again. But then they realized he just knows the faster he gets his chemo treatment, the sooner he can go home.