Sunday, October 13, 2013

Amusement Park - BMT +47

Well, today didn't go exactly as planned.

By 11am, they still hadn't called Sam for surgery. Turns out a few other cases had come into the ER and they took precedence. I was starting to lose my mind a little bit, since this was now the second day in a row that we'd kept Sam without eating for most of the day. And then the doctors told me that after today's procedure, they still planned to proceed with tomorrow's (to place a PICC line)....a third morning without eating!!!!

Then I lost my mind a lot. It was the straw that broke the camel's metaphorical back. Have I mentioned how much I hate weekends in the hospital???

A few phone calls placed and a screeching halt was placed on the surgery plan. A whole new plan in place and a flurry of activity. Labs. Questions. Conversations. Consultations.

I learned today that a side effect of total body radiation can be a few of these sleep-all-day kind of days -- six weeks later (much like when you have a baby and then someone tells you about those growth-spurt-marathon-eat-sleep-eat days). It's possible that Sam's desire to stay in bed all day and sleep is related to that.

It's also possible that there's something going on with graft-vs-host disease in his esophagus and stomach. Fatigue and a general icky feeling are symptoms of that (how vague can you get?!) along with the low-grade fevers and nausea.

What seemed like such a simple diagnosis -- the bloodstream infection -- is not quite as simple. It's still not over-the-top-scary, but I think by now you all know that Sam is not a stay-in-bed-all-day kind of kid.

Finally they decided to give him a unit of blood and see if that perked him up. As I type this, the blood is finally going. His blood type has changed due to the transplant so there are always a few minor hiccups giving blood now. He has eaten a little, and he's more talkative. Hopefully things are on the upside....

I texted a friend "Hello, roller coaster?!"
She wrote back: "Not just a roller coaster. A whole darn amusement park."

Yep, that about sums it up.
So....hopefully tomorrow will be better. And there will be a plan put in place.
And eventually we'll figure it all out.

Until then....I'd prefer the FastPass, please.


  1. much more art than science in medicine, which is sometimes good news, and sometimes pull-your-hair-out frustrating. I applaud your ability to follow your instincts and be such a fierce advocate for Sam. He's a lucky little dude. You're always in my thoughts and prayers.

  2. I'm so sorry to hear this. And I had thought that you were going to blog about a fun day away from the hospital.
    Refuah Shleimah