Back in the Hospital - Day 17

"The best way out of difficulty is through it" - Will Rogers

You could say we were semi-prepared for this.  When we were discharged two weeks ago from LPCH, we were reminded from three different nurses and doctors that Ellie's immune system would have a hard time fighting any sort of bug.  And last night, at about 4am, El had her first fever of 100.5°.  Anything above 100.3° is an automatic trip to the ER, so off we went.  Ellie's Neutrophil cell count needs to be above 500 for her immune system to be able to fight disease; but as a casualty of the chemo drug vs cancer battle, it has been hovering around 200.  We are told most of the bugs she is susceptible of catching are actually coming from her own body, assuming we're not parading her around say the Costco crowd on a cold Saturday with no jacket on (believe me, most days you cannot pay me to go to Costco anyways, so trust we know what we're doing with this particular parameter).  A normal child's Neutrophil count is about 2K and above, so we're a ways away.  This will be something we're battling for a good portion of the next year and all ready I can forecast frustrations with being stuck in the hospital.  Protocol for discharge is 48 hours fever free and a Neutrophil count of 500 or above. With chemo coming again on Wednesday and El's current Neutrophil count at 100, we are very unfortunately looking at spending the entire week here at LPCH.

Polly bought us this great new travel bag for clinic days (and in-patient stays it seems).  It is the modern day travel package 8th wonder of the world.  I am pretty sure it transforms into a robot, but still too soon to tell.  The bag has several pockets, can hold a good days worth of food for El plus important documents, medications, diapers, Chemo Duck (yes he now goes everywhere with us), and the "Pay-Pay" (That's the IPAD - can never be too far away from Super Grover youtube videos).  It is basically a house in a bag and all we had to do last night was grab it and go - we're learning.

I wish we could say we are at ease with the bumps we've been told to expect but several things still raise the blood pressure a bit (ok, alot).  We are still coming up to speed on all the quirks that may occur with various tests and whats considered routine for a patient on chemo.  The hospital world seems filled with many many people that put on smiling faces and try to make you comfortable but it is always my instinct to want to know if anything major has popped up after routine tests comeback in today's nurses' words "a little funny".  Call it a reoccurring bad dream from that awful doctor call on Hwy 101 on June 26th.  Ellie's Potassium test came back today sky high in a range where it sounded like if it were a true value people were going to start being paged.....and people were going to start being paged NOW.  (This is one time where my Chemistry degree was not beneficial to my emotional state of mind)  So, they decided to redo the test a second and then a third time to replicate the result.  About 2 hours had gone by at this point and finally we got word the third test (done in the other PICC line from the first two) was normal and thus the first two tests must have been sampling or lab errors.  The resident doc calmly comes back and says "its been known to happen".  DOES IT NOW?!  (big exhale)  I know we'll get better at knowing what is appropriate to react to and what's not worth it with these seemingly infinite lab tests, but being a cancer treatment world newbie is very difficult.  Thank god for lab errors.

Last night was a little surreal.  Polly had just been up to change her diaper at about 3am.  About 40 min later, we both awoke to this annoying toy making sound in our baby monitor.  Its this toy car that has a button on top that when pushed plays bad early 90's Technotronic music and doesn't shut off for a good 5 excruciatingly looooong minutes.  I wish I remembered who gave it to us because I will gladly repay the favor for their next child and send over a Tickle Me 'Slipknot' doll.  Turns out the car was just outside the kids door in the backyard within reach of my hand if I could quietly open the sliding glass door.  So, I decided to be stealth, crawl on the ground in the kids room, open the door, and get the toy car.  My master plan was working until I closed the door to the backyard and turned to crawl out of the room when Technotronic decided to play an encore performance.  That was it, El was up.  We let her come into our room since it was nearly 4am and we knew the food cries for 5am yogurt would start soon.  I set Ellie with Polly and went upstairs to dismember the car thus ensuring it could not make a harmful sound again.  Once that was complete, I got back into bed and felt Ellie's forehead like I do most nights as a check, got back up to get the thermometer, and here we are now looking at a week of LPCH residency.  Two questions come to mind - How did the toy get turned on from outside originally and how bad would her fever have been if we hadn't noticed it until 2-3 hrs later when we got up?  I cannot believe I am saying this - and you cannot tell ANYBODY - thankyou, Technotronic.

BTW, Polly would welcome visitors this week if you are wanting to drop by.  You need only be healthy to do so.  The company helps pass the time, since as I mentioned one can only handle so many Super Grover videos (he really leaves a lot to be desired as far as super heroes go).

Being in the hospital is reassuring in the sense that we know she is being monitored 24 hours a day.  This state of being neutropenic (neutrophils < 500) is going to test our resolve down the road, I can tell.  So we have to go through it.  The environment is still very scary.  A month ago we were laughing and playing in the waves with both kids while camping in Carpenteria....and now we're agonizing over potassium test mishaps and cancelling most plans for the next few months.  We just don't want anymore surprises.  Ellie is being very brave despite her steroid puffed appearance and trouble now walking because of joint pain (common side effect).  I really could not think of anything or anyone I have ever been prouder of.  She not only smiled at me when I was leaving tonight to go home but also gave me two high fives.  We know this is difficult right now, but looks like she is taking the lead....to get us all through it.