Getting Fevers Down and Sodium Up

Brendan and I both got a lot of sleep last night.  The hall lights were turned down and the techs all whispered to each other all night long.  The only time I woke up was at 2:30 a.m. when Brendan threw up all the sodium the nurse had just pushed into his feeding tube.  With as full as PICU was getting, I was sure we would have roommates by morning, but no one moved in.  (We found out later that it was because Brendan is immunocompromised and on precautions and they couldn't put anyone sick there.)

 Since they couldn't afford to give up the double space, they moved us across the hall to a single room.

 Having real walls makes for a much quieter space.

PICU said that they thought Brendan was stable enough to return to ICS.  ICS said they didn't want him until his sodium numbers were out of the 20's and into the 30's.  Otherwise, they argued, they would just be sending him back down after his next dose of chemo.  And they felt they had moved us enough.

 At noon, the parent hour organizers came by and invited me to lunch.  I couldn't have even told you what day of the week today is.  I enjoyed lunch and the company of other parents.  It made me realize that I have no business complaining about being here.  Metabolic disease, liver transplant, kidney transplant, and life threatening lung diseases were some of the things other parents were dealing with.  "Maintaining sodium levels during chemotherapy" sounded rather tame.

(I thought my kids would get a kick out of this cartoon!)

 Brendan was going rather stir crazy this afternoon.  He entertained himself by playing with the controls on this new bed  -- raising himself as high as the bed would go, then tipping his head down and his feet up over his head.  These new beds do some crazy moves!

All afternoon Brendan would start to fever, then the fever would go away.  He flirted with fevers until 4:30 p.m. when he began to heat up quickly.  His fever jumped from 99 something to 104 something.  The nurse brought me ice water and I dipped a washcloth in it to keep on his forehead.  It didn't take him long to heat up the rag.  All this went on while Brendan was  coming off an earlier dose of Tylenol. Brendan was miserable.  Finally, he could get more Tylenol.  Within 30 minutes he was feeling well enough to play with his bed again.

 At 6 p.m. the ICS nurses brought down the chemotherapy (Etopocide) and hooked up the tubing.  The PICU float nurse drew blood for another serum sodium test.  This morning sodium levels dropped to 124 again, but this afternoon they were up to 128 and he's maintained that through two tests now.

 With the last dose of chemo done for this round, Brendan worked hard to get his temperature down and his sodium up.  He had figured out that when those two things happened, he could move back up to the 4th floor.  His thought therapy worked -- for awhile.

Brendan had a bed bath and we changed his sheets and his clothes.  He peeled the band-aids off his fingers.

 In order to keep Brendan's bed on the ground and his head above his feet, I proposed a game of Monopoly Deal.  (Hillary, his child-life expert, had let him borrow it while he is here.)

 We made it through two games before Brendan was too tired to play anymore.  We brushed his teeth and tucked him under his blankets.  We've tried to give him the last of his sodium dose, but he's been too nauseous.  Before we gave him more anti-nausea meds, we decided to check his temperature again.  He's fevering again -- 100.8.  That brings on another set of blood culture tests.  They are drawing those now.

Brendan has shown no symptoms, despite off and on fevers, for the past 3 days.  Nothing has grown on the cultures.  A virus test was taken earlier tonight.  We'll see if anything shows up this time.  At least chemo round #5 is done.  Now it's a matter of getting him well enough to fight off whatever is bothering him.