Tears and Triumphs

PICU is a hard place to be.  Not just physically, but emotionally.

 Physically, it is hard because there is no bed to sleep on.  In this particular room there is no sink and no bathroom, no paper towels.  With a shared room, there is no privacy (except a curtain).  Every conversation is overheard, day and night (especially night).  Another hard thing is that only 2 people are allowed into the PICU room at a time.  So if more than one visitor wants to come in, I have to go wait outside.  Also, no food is allowed into the rooms except snacks.

(Speaking of food, his morning I was thinking just how good a sweet pork salad would taste.  I thought about leaving to go get one, but Brendan was having a hard time this morning and I didn't want to leave him.  I always know Heavenly Father is watching over me, but what an amazing experience it was today to not even verbalize my desire through prayer, and to have a wonderful friend call and say that a sweet pork salad had just been delivered to the hospital and was waiting for me!  Talk about tender mercies -- and inspired friends.  I am so blessed!)

  Sleeping here is always difficult.  Nurses bustle in and out day and night.  Lights are always on.  Mobile x-ray machines rumble past rattling the glass as they move down the halls.  The techs outside the glass sit at their desks and talk and talk -- all night long.  Sometimes it gets loud.  At 3:30 a.m. this morning Brendan was in tears.  He was so tired, didn't feel well, and couldn't sleep.  He'd asked the nurse to close the doors behind her, but she kept forgetting.  By 4:30 a.m. I had had it!  I was totally exhausted and had only slept a handful of minutes.  I wanted to step out and give everyone a piece of my mind, but instead, I asked for earplugs for Brendan.  (After using them, he highly recommends them.) One of the techs later asked me if they were making too much noise.  It was a nice gesture, but nothing changed.

Sheer exhaustion finally overcame all else and we both slept from 4:30 a.m. until the nurse change at 7 a.m.

 In the meantime, Brendan's sodium levels dropped last night from 128 to 126.  (Remember, normal levels are 135-145; seizure levels for Brendan start around 126).  Then from 126 down to 125.  By morning they were settling in at 124.  Enteral (feeding tube) sodium was increased this week from 6 to 12 to 30 to 40 to 60 m/Eq.  And tonight it has been increased to every 6 hours instead of every 8.  That's a lot of sodium to stomach :)  And Brendan has a hard time keeping it all down.  We've spread out the amount squeezed into his tube over half and hour -- and mixed it with his food -- and given him anti-nausea meds -- all in an effort to get it down and keep it down.

Finally, two doses of 3% sodium solution was given to Brendan through his IV overnight.  They helped maintain his sodium levels for a few hours, but didn't stop them from dropping.  At one point we got a 123 sodium level count, but re-tested to see if it was accurate, and it was back up to 126.  That's a better direction.

 Because Brendan was maintaining his sodium levels at 126 this afternoon, his etopocide chemo was delivered and started by the nurses from ICS.   (PICU nurses were glad to let them take over in the chemo department.)

 Brendan's poor fingers!  They have taken pity on him today and drawn all his sodium tests from his port and left his fingers to heal.

 That made Brendan smile!

 Despite the physical challenges of staying in PICU, it's the emotional challenges that are the toughest.  The whole atmosphere is emotionally charged.  Adrenaline runs high because life and death issues happen rapidly and regularly here.

Tonight an 11 year old trauma patient came in.  When the boy was wheeled past our room my heart broke.  He is the same age as Brendan.  I couldn't help but thank my lucky stars that I was sitting quietly in a darkened room as chemo was dripping silently into my sleeping 11 year old son's veins.  I hurt even more a few hours later as I passed that boys tear-stained parents and siblings coming into PICU.

 Last night we shared a room with a girl who had just come out of brain surgery.  Waves of emotion swept over me as memories of our first PICU (post brain surgery) adventure were re-lived.  The sound of the voice of the neurosurgeon awoke in me today strong feelings and memories recently forgotten and/or repressed.

Watching the mom across the corridor kiss the face of her unresponsive daughter as she was rushed off to emergency surgery wrenched my heart and wet my face with tears.

I didn't want to come to PICU for lots of these reasons.  I've been here enough to know.  Being shut up in the quietest corner of the fourth floor during chemo treatments is its own kind of easy and safe.  PICU is both physically and emotionally challenging but we are grateful to be here where we get the help we need when things get physically challenging for Brendan.  As hard as it is to be here, they know how to help, and we are so grateful for that.

(Hey!  They just turned out the hall lights.  And they are keeping it quiet tonight.  We just might get some sleep!)