Friday, March 21, 2014

Our "new normal"

The doctors and nurses keep referring to our "new normal" which I've started to do too.  Everything will be a new normal for us - and good luck thinking we'll ever have our old normal back.  Sayonara old normal!!  We will miss you!! (seriously, we will.)

Just when I was thinking I might, maybe, just a teensy little bit, have things under control at home - we go and have a lab and follow up appointment with the center in the morning.  And, poor Callum puked before even really getting out of bed.  So, our morning was rushing around getting ready to leave, calming him down, getting him dressed, packing bags (not just some snacks for the long appointment but what if things go wrong and we're there all day for transfusions?  or, heaven forbid, admitted back into the hospital?  these are things we have to consider and be ready for now - so I packed an overnight bag as well), etc.

We finally get out of the house - probably 5 minutes late, and just as I'm about to turn onto the freeway I realize DAMNIT we don't have his mask (which he has to wear at all times while at the hospital - lots of construction as well as other sick kiddos around).  Sooooo, I turn around, run into the house, grab the mask, get back onto the road, and voila! we show up 10 minutes late to our lab appointment.

But, the waiting room is PACKED TO THE GILLS so they were another 10 minutes before seeing us for the lab work, and then another 45 minutes or so before they ushered us in to meet with the nurse and review our lab work.  Ugh.

Meanwhile, poor Callum, was having A. FIT.  He was NOT happy about being back at the hospital (can't say I blame him!), and he was still feeling pretty crappy from the morning throw up, and because of THAT, he hadn't eaten or drank anything all morning and here it was almost noon.  I had plenty of snacks but then Moody McMoodster arose and HELL NO was I getting any snacks into that kid's belly.  So yeah, there was that too.

We finally saw the nurse - everything looked great.  They were super pleased with how he was responding and looking as a Day 6'er.  And his lab work didn't indicate any need for transfusions (yay!).  His platelet count was great, his hemoglobin count was great.  His neutrophils are way down - so he's definitely still neutropenic (which is expected, it just means we have to be hyper vigilant about protecting him as much as we possibly can, from any viruses floating around).  We talked a bit about his nausea and how to combat that (I am more than welcome to medicate him more proactively, so we're going to try that tonight, more on that later).  Two and a half hours later, we were finally on the road back home.

Callum then really perked up for the afternoon - he was SO HAPPY to be back home and away from the icky hospital, and he was hungry too (imagine that), so he ate a big healthy lunch.  Somewhere in there I also took care of his PICC line flush and cap change (eeks!) - Jon provided moral support (and teasing) while we took care of that.  Nerve wracking!

We also got a call from one of the center's nurses to talk through and prep for Monday's procedure.  Lucky us, they had a few cancellations, so our leisurely 9:10am appointment was bumped up to the first slot.  We now have to ARRIVE at 7:15am (it's a 30 minute drive).  What a major bummer!  :(

I was trying to figure out where the heck our day went, when I remembered most of it was consumed by the damn trip up to and back from the hospital.  It really throws a wrench in your day!  So, the afternoon slipped by….

We had a couple of stressful events this evening - first, I had noticed Callum was shaking, but didn't feel feverish.  I had remembered reading something about shakes in my (bigass) binder so I went to look it up.  Sure enough, they want you to call anytime he has shakes or chills, with or WITHOUT fever.  Damnit.

So, Jon spent time on the phone with the on-call doctor talking it out and we agreed to cover him with a blanket (in case he was just cold vs. feverish) and watch him for 30 minutes.  If the shakes went away, he was probably just cold, but if they remained, it could be the start of a fever (very bad for us, we'd have to rush to the nearest ER).  So, I sat with him covered in a blanket for 30 minutes holding him and watching for any more shakes.  Nothing (and no fever) - so we called the dr back.  He said to just watch him for the rest of the night, take his temp again before bed and again in the middle of the night, and see how it goes.  GAH!

We finished his evening meds and he seemed content so I left him on the couch to go have dinner.  He came up to the table, complaining of his neck hurting (which he generally says when he's feeling nauseous or about to throw up - I can only assume it's some sort of acid reflux, he's done that before this treatment as well), so I sat him on my lap and rubbed his back to talk to him.  Seconds later, he had puked all over the plate in front of me.  Awesome.

So, since we had just given him meds not too long before, back on the phone we went (it was my turn this time) and talked to the on-call doctor again.  Since it was very close to the window where he'd say to re-dose, and because both Zane and I - while not paying close attention to the puke - remembered it being a brownish-pink color (and his meds are reddish pink because I mix them with raspberry syrup), the doctor and I decided to give him another dose of his Dex.  We discussed the risks of another dose vs. not getting his dose - and not getting his dose was much much worse, since this med (the steroids) is very important alongside the chemo.

But, this time, he wanted me to give him some anti-nausea meds (Zofran) first, wait 30 minutes, then give him his second dose of Dex.  Which I've now done.  And feel like I'm on pins and needles anytime Callum coughs or acts like he's going to heave.

And I'm exhausted.  And I didn't get jack done today.  But hey, whatever.  It's our new normal.

1 comment:

Diane R. Stewart said...

Such rough stuff! My heart goes out to you all. Consider yourselves all hugged.