July 30.2

A huge shout out to BagsOfFun.org

Out of the blue Joshua Hetherington received a bag today while in the ICU at Children’s Hospital Colorado .

He couldn’t believe his eyes when we went exploring and found all sorts of things that related to him. image

And as you can see, he was very excited by the package in the front pocket of the samsonite backpack!

All of these items will have a definite place as we transition from surgery in to radiation/infusions/chemo.

July 30

All good through the night, MRI is scheduled for this morning (there is always a post brain surgery MRI). There really is no need for us to be in the ICU at this point as he’s up around and moving so I think they’ll move us to a regular floor – there’s still potential for them to release Josh tonight.

July 29

 This morning is all going as it should. Josh is back in the OR as I write and should be under by this point as they settle him in to position and get the neuro equipment programmed. 

I’m sitting outside with my coffee getting a little fresh air while I can. Breakfast soon.

A much better result after a disaster last night when we were left in discharge for over 2 hours, forgotten about and eventually we walked ourselves up to our room on the 7th floor. It made for a long, long tense day.  (I’m annoyed with being bumped but not angry – there’s a kids parents sitting somewhere upstairs very glad their trauma case went to the head of the line. I’m angry at how the ball got dropped elsewhere.)

There have been words, and apologies, and no doubt I’ll hear from someone a little higher up at some point today.

But, I’ve bigger things to worry about for the moment….

July 28.3

And a trauma has set us back until 7.30am tomorrow…

Sucks for us… And I can only feel for the parents of the child involved in the trauma case.

July 27

The Night Before Surgery… Again

‘Tis the night before surgery and all through the house, not a creature was stirring… except the tired, worried parents and a nervous son…

Third brain surgery tomorrow. While the second was almost ‘eh, we got this’, for some reason this third time is making me nervous. Maybe because the others have been on the fly, this one is planned? I do better with snap decisions.

Or just perhaps, three times in to a person’s brain in such quick succession seems to invite difficulties?

And I just could be tired and feeling gloomy… no one had naps today. So early to bed it is!

 

XX Debbie

 

PS: Thank You Julia and Stace Bechtel for your visit today – It definitely helped Joshua fill in his day!

July 24.2

So.

A small piece of tumor that was hiding has made its presence known, so it needs to be OUT!

Surgery next week.

Not quite what we’d wanted, but what we’d expected after that phone call late yesterday.

It’s not new, same spot. It’s just a sneaky son of a bitch.