Sunday, March 31, 2013

Day 4 - Still Inpatient & Happy Easter!

Day 4 - Happy Easter!

The Bunny did not disappoint!  I'm told that he schlepped home late last night to bring back Aidan's Easter Basket so that we wouldn't have to miss out on the holiday.

I think because Aidan can't have candy, The Bunny feels a little bit guilty and may or may not get a bit more stuff than Aidan really needs.  But at least it's contained in one basket - Facebook would have me believe that Easter is reaching Christmas proportions nowadays!

Aidan got a new pillow pet (Deetz (Biscuit) has seen better days, and really, can you ever have enough pillow pets?), a stuffed bunny, a stuffed platypus, a stuffed peep, an Easter book, a CD of kids songs for the car, a Superman coloring book, Superman pens, a new toothbrush, toothpaste, and a slew of rubber ducks.  Also - the biggest hit EVER - Superman shoes!

The shoes were enough to encourage him to get out of bed and run around for a couple of hours.  He's off his IV because it clotted up yesterday and no one could get it to flush, so our wonderful day (Alex - we love her!) just pulled it.  It was doing him no good anyway, and now he has his arm back!

Today, we are up to full strength Elecare Jr.  My fingers are crossed, I guess, although I don't even know what I'm hoping for.  I hate seeing him miserable and vomiting.  But I also hate seeing him tolerating the feeds like everything's fine, when I know that everything's not fine and hasn't been fine in months.  I'm afraid that he'll tolerate feeds okay here because he had such a long break from them, but by the time we get home he will be back to his pukey self and we will have accomplished nothing.  We are still waiting to hear whether or not IR will place the GJ tube.  I think the GJ is the right move, but Tom doesn't want to do it.  The doctors want to do it but aren't sure he's healthy enough for IR take him.  We'll see how it all shakes out, I guess.

In the meantime, we had a fairly quiet day and full strength feed were tolerated pretty well.  He's getting the less tangible symptoms - the reddish cheeks, the coughing, the tantrums immediately after feeds - but he's not vomiting.  So I guess they call this "good enough"?

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