Chapter Eleven, "The most expensive gas bubble" and "Home again, home again, jiggity jig"

Italics are Facebook posts from two years ago. Intermixed are comments in regular text that I am adding today.


April 11, 2012

10:58am

Watching some TV, drinking some of mom's water, waiting for PT to come play. Possible discharge home today... :)














April 11, 2012 1:58pm

One of us is napping, the other is packing, both of us in preparation for heading home this afternoon. The discharge order is officially in and we'll hopefully leave in time to miss traffic, but you know how long discharge paperwork can take.....


That comment about discharge paperwork was me making a joke. Patients are always impatient (understandably so) about getting their paperwork when it's time to discharge. It's kind of a sore point with most nurses because, sadly, that paperwork usually takes a good long while to fill out. One of my nurse friends asked, "Yeah, but are you harassing them like we get harassed?"

No, of course I wasn't. (...but I kind of wanted to.)

5:49pm
Discharge home? Psych! Somebody's belly is distended and very sore. One more night of excellent care (along with xray, ultrasound, and bladder scan). *wishing we hadn't already packed everything in the car*

Our paperwork came to us in a timely manner, it ended up being me who delayed the discharge project. I mentioned my concerns about his unhappy belly and, just like that, our plans for heading home were derailed.

7:09pm
They have a fancy portable X-ray machine that shows the images as they are taken. Looked like a giant gas ball to me. We'll see what radiology thinks. If so, these may be the most expensive farts ever made. (And being sure it's not something worse makes them worth every penny)

It was expensive farts. And the most giant poop a four year old has ever pooped. I took a picture of it. Weird, I know, but that's how very, very big it was. Don't worry, I won't subject you to the picture.

Grammy stayed the night with us in the helicopter room and the next day we piled in the car for the first of many, many drives home.

April 12, 2012

4:53pm

Guess who's home?
















9:52pm
For better and for worse, everything feels more real now that we're home.


April 12, 2012

*icky face*

"What's wrong, Sam?"

"This medicine tastes gross."

"Gross?"

"Yeah, gross. Like fruit snacks. Like fruit snacks on fire."

This is one of my favorite Sam-isms of all time. I can't tell you how many times I have laughed about "fruit snacks on fire".

A friend asked which med it was, I replied, "Dexamethasone, which apparently has a fairly high alcohol content. Because mixing booze and steroids is such a good plan for kids. *sarcasm*"

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This next post covers much of how things were going and what I was feeling once we got home.

April 14, 2012 10:59am

Being home is good and weird. Sam is getting around better every day, but still doesn't trust himself. I think we all had expectations of getting home and having everything immediately feel more "like before". He's easily tired and, because he's more active at home, needs more pain medication for his belly where the shunt is tunnelled. His balance is impaired and he still has double vision, both make mobility a challenge. We (the grandparents, auntie, and I) are all so afraid he'll fall and whack his head that we're hovering, which decreases his confidence further. It's hard and sad to watch him not trust his own body. It's also hard to not hover, despite the fact that it's not what he needs.

He is, mobility and confidence issues aside, doing incredibly well. The doctors are marvelling at how much ability he has retained. More than once we have heard, "kids just don't look this good after this surgery". Even his balance and vision are improving at a remarkable rate.

Radiation and chemo scare me, though not as much as the surgeries. I know that the adult person he will be is going to be different than the person he would have been without all of this. Chances are very high that his hearing, vision, spinal growth, memory, cognition, and fertility will all be heavily impacted. I am hopeful that he will, as he has been, surpass expectations. While I find myself mourning my prior ideas about who this smart, observant kiddo could have grown to be, I am excited to see the man he will become, in spite of and because of the challenges he is facing. If we have to be on this journey, if he has to be going through this, I can't think of a better place in the world or time in history (thus far) to be doing it.

Thanks, friends, for being such great support for us. I think we are going to be leaning on many of you quite heavily for some time to come. I am attempting to be graceful about accepting that, but... man. It's hard work.

For those of you planning on pizza on Monday-- Thank you! And eat a slice for Sam, he likes pepperoni :)

The first of many fundraisers happened the following Monday. Tammy, Kevin, and some of my other work friends arranged a "half-night" where half the proceeds from the sales at a pizza place would go to Sam's medical fund. It was one of the busiest fundraisers that pizza place had ever seen. I loved seeing the updates come in on Facebook where my friends from work and my friends from other parts of my life were meeting while they waited in the long line for dinner that night. I heard stories later about how every floor and most shifts in our little hospital ordered pizza for lunch and dinner. I heard rumor that there was leftover pizza in refrigerators all over the hospital for days.

I am still blown away by all of the love and support we received.

And as to the fact that I felt less scared of chemo and radiation than the surgeries....

That was silly.

Next up: Chapter Twelve, The Time Between.