Friday, July 17, 2009

Back Home

We’re headed home this evening. Killian just finished his third course of radiation and his back should feel somewhat better soon—maybe by next week. We’ll go home to a different set up. He asked for a hospital bed, as it’s almost impossible to get comfortable unless he can change positions easily throughout the night. The delivery guy came this afternoon, and I understand from Cat that the bed's been delivered. Jim and Sharon Sofranko came over to move the TV down to his room so he can get lost in movies, games, whatever. Jim hooked our TV up so we could watch movies, play video games or watch TV with a simple press of the remote. Ingenious. Setting this up has eluded the Mansfields and our relations for three+ years—since we acquired this very TV set. If electronic divertissements were life sustaining, we’d be rooted out by natural selection, while the Sofranko clan thrived.

The other set up is that Killian will have a unit hooked up to his port to deliver a steady stream of intravenous meds. That’s fine, as long as there are no acute incidences of pain (which is like saying we can do without a toilet as long there are no incidences of urination). The medication he prefers for breakthrough pain can’t (by law) be dispensed intravenously by me—a nurse must do it. We don’t get a round-the-clock nurse. Not sure we want one anyway. Apparently, there’s no issue whatsoever (by law) if I accidentally overdose him with an oral opiate solution. They just don’t want me accidentally overdosing him intravenously. I add that to the long list of health care mysteries that elude me. I suppose he'll be fine with the oral solution.

Last night, a lot of anger played in my head. Phil says he gets waves of it about “the healthcare system.” I get waves of it about various subjects: people who have recently hurt me, people who hurt me in the past, raccoons…pretty much in that order last night. Today I did played the angry hospital scene (remember Shirley McLain in Terms of Endearment?) I’d no sooner taken a breath from that nonsense, when I found myself going off on an anger dump about meds (see above). I realize, though, after weeks of predominant sadness—being sad robs you of your response mechanisms. We need adrenaline at the ready. We’re taking our boy home and we’re on our toes.
#@$* raccoons!


Nancy Dawson said...

You are dealing with the hardest situation imaginable and I'd like to smash some walls or blow off the top of a mountain with you. I love you for your dignity and love, I totally understand your anger and love you for that too. This fucking sucks and you all are heros.

Ilene said...

effin raccoons.
safe travels.
much love.

Laura Berman said...

You are all amazing. And I am so sorry that you have been dealt this excruciating hand. You write about it with amazing grace.

My frame of reference for what you are going through is very small except that I can share the anger and frustration with the healthcare system. Wyatt's siezures and our multiple hospitalization, drugs, etc. has put us up against the stupidity of the system over and over.

We appreciate hearing your updates on FB and elsewhere and please know we root for you all with prayer, good wishes and healing vibes. Laura

Maude said...

Dear Babs, Phil, Killian and Cally:

This whole thing totally way beyond sucks. You guys are amazing. Your ability to love and support each other and still be out and about in the world and even on the web sometimes just boggles the mind. Much love to all of you.
Maude et al

Ali said...


I was a counselor at THITWGC last summer in Killian's unit and I just wanted to send some positive vibes over to him and your family. I've followed your blog ever since it was shared with the counselors and in that time have been so taken by your family's strength and sense of adventure. I already knew Killian was a cool guy :)

I also wanted to share that I have the album in my amazon basket and I truly look forward to hearing it!!!
Ali Lampner

Readerstheater said...

Dear Babs,
I love you and your family.

Laurie said...

Sheesh. Sending love your way.


Jackie Kuhls said...

You are such an incredible family who seem to squeeze every bit of life out of each day. I admire you all. Killian is my hero.