Wednesday, June 27, 2012

[June 27, 2012] Wednesday

Very little drama during the night.
Well, except the fact that I didn't wake up right away when he needed to go to the bathroom, and he threw "Uncle D"  (his stuffed horse) at me.  ;)

We slept very well.

This morning's ANC is ZERO.
We are stuck here in the room until his counts start to recover.
Luckily Kenton has his iPad, his Legos, his movies, and me (lol) to keep him occupied.  Maybe I'll be the mean mom and make him do some math or something.

The only other thing going on (other than the ANC of zero and platelets in the 40s and the other low counts that are expected after chemo) is the onset of a rash that has spread over his chest, stomach, back, arms, and thighs.  The doctors are pretty sure it's a drug rash, but have no idea which drug might be causing it.  Hard to say since he's getting sooooo many every day.  They're switching out the Vancomycin for something else to see if that might be the cause.  Poor kid.  Luckily it isn't painful - just itchy sometimes.

Breakfast was a bust.
He ordered french toast and cottage cheese and apple juice.
The smell of the french toast was too strong.
He ate a couple of bites of cottage cheese, tried a bite of french toast.
Coughed really hard and threw up.
So. . .breakfast consisted of one more bite of cottage cheese and 2 cups of apple juice.
I think he might have a bit of an apple juice addiction.
At least he's getting a few calories and a bit of nutrition (although not sure how nutritious the apple juice actually is).  They're concerned about his calorie intake.
He's trying to eat more, but when the smells register so strongly that they make him gag, it's not easy.
I did talk him into eating a bite of a peanut butter rice crispy treat thing.

Today is Wednesday, which means hospital bingo day.
Kenton played bingo and blackout via tv.
His bingo prize is a super cute ostrich TY beanie.
Great - one more thing to throw at me when I don't wake up fast enough in the middle of the night.  This one will hurt much worse than the horse!

We're going to order up a super hero cape kit from the Kids' Club to work on this evening.
I think he deserves a super hero cape!

He just ordered lunch - we'll see how that goes.

On the home front, Miss M spent the day with the Madsen family.  Jess just sent me a picture of McKayslin feeding the chickens with Jess' little guy.  I'm not sure what McKayslin is loving more - being the "big sister" for the day, or spending the day with Jess!  Talked to her tonight and found out she "went to the farm and rode the 4 wheeler and tried to get some milk but it was gone, and did I know that Mrs. Madsen can drive a 4 wheeler?!  And sometimes she would go really slow and then all of a sudden go really fast and I would just giggle?!"

Yesterday she was with one of her very best friends Jelly and their family - they went grocery shopping.  It was funny how exciting that normal activity was for her.

We're so grateful for good friends that take McKayslin each day and let her just hang out and do normal family stuff. We have the medicine to treat Kenton. We are still trying to figure out the best way to help McKayslin adjust to this new reality. You don't get doctors' orders or prescriptions for that. . .

Be back later with updates about the afternoon.
I'm back.

Lunch was not a big hit either.
The mac and cheese was too salty.
It's so weird all the things that chemo changes.
Kenton had about 8 small bites.
Didn't touch his chips.
Had 2 swallows of lemonade.
And took a nap.

Tod stopped by with a sudoku book and well wishes.
Kenton's not so sure about sudoku - "looks an awful lot like math. . ."
That's my boy, lol.

He's back in bed.
Watching Chisum through half closed eyes.
He needs to rest.

Back later.
And here I am to finish off the day.
We tried to make a bracelet and failed miserably.
We'll try again tomorrow.

We didn't get to the super hero cape - that will be tomorrow also.
Along with Kenton's big plans to play a few rounds of UNO and learn how to play Phase 10 so he can play with Reygan when she comes next.  I should probably learn how to play so I can teach him. . .guess we'll learn together.
Hopefully he can have a shower tomorrow, too.

Skyped with the Boise cousins and Daddy and Goosey and Grammy and Sparky (that was funny - the poor dog was so confused trying to find Kenton and I in the house!!).
LOVING the technology that lets us SEE our family at home and talk to them!

Dinner consisted of a FULL serving of Top Ramen!

Funny thing is, he said, "This is sooooo weird.  I don't even like ramen and this tastes SOOOOO GOOOOOOD!!!"  I cracked up.
Now, we are ready for bed - teeth brushed, jammies on - watching Tanked until 10.
Then it's LIGHTS OUT! And hoping for another great night of sleeping!

Nurse Erica is our nurse tonight and she is by far the quietest nurse we've had.
I didn't have to push the nurse call button a single time last night.
She caught the machines before they beeped every.single.time.
The only time I woke up when she was in here was at 4 when Kenton needed eye drops and Tylenol and was having a bit of a fit as he generally does when he gets woken up.
Compassionate, no nonsense, quiet, and to quote Kenton, "She definitely knows what she's doing!"

Of course, we also really love Nurse Tabitha (who spent countless hours monitoring Kenton's fever over the weekend and left us the sweetest cards at the end of her last shift) and Nurse Erika (who played Flipping Frogs with Kenton and the cousins and has stopped by to say hi even on days when she's in a different pod) and Nurse Kathy (BOSTON!) and Nurse Tristyn (Tristyn the Great!). . .okay - we really pretty much love them all.

Hard to believe we've been here nearly 2 weeks. . .
And that, my friends, is day 13.


Dani said...

He does deserve a super hero cape! Sounds like you guys have a great set of staff up there. And yay for ramen noodles! :)

luckeyfrog said...

Thinking of you and your whole family. I imagine it's so hard for you to watch. How old is your son?

Praying that his body builds up some new immunity to kick that cancer out REAL soon.