One week later

Today has been a little rough. When Laura and I called in this morning to check on Simon to see how his night was, the nurse said he was pretty agitated all night and didn't really sleep. My poor Mom was at the hospital with him, so she didn't get much sleep either.

I kind of think it's the "he's getting better so he's feeling worse" thing. He hasn't slept all day so far, minus a few minutes here and there, despite a sedative! He's mostly just crying and irritated and it's making Laura feel like she's going to lose her mind. I feel mostly terrible for him and occasionally a bit woozy from the stress of it.

We have turned the right side of his head into a freaking arts and crafts project, trying to keep his Intra-Jugular line (IJ) from getting pulled out. The kid has an IV in his jugular. It's so crazy. We've tried everything from rolls and rolls of tape to what I thought was our piece de resistance last night- wrapping gauze around his head until he looked like a WWI fighter pilot who crashed down in some foreign land.

Unfortunately, he was not pleased about our artwork and stayed up, furious and scowling (it pushed his little eyebrows down so he looked like a menacing prizefighter) until we ditched it this morning. The nurse added a spacer so the big arm of the ports is a little further down the line and pulls less at the site where it's attached to him. He already pulled out one of the sutures that was holding it in, days ago. Scrappy little baby.

I also decided on his stage name. When he gets fed anything through his Naso-gastric tube (NG tube) it's called lavaging it (pronounced leh-vahge), so I think he shall henceforth be known as Shimmy Lavage while on stage.

Presenting Scarlett Bottoms and her son, Shimmy Lavage!

It's got a nice ring to it, dontcha think?

The bounty just keeps coming. Had biscuits, raspberry empanadas and a plate full of bacon dropped off for breakfast, got incredible pulled pork with all the fixins plus cookies at lunch and a bunch of lovelies from my dance troupe attacked our backyard. This morning they weeded, mowed and planted indigenous blueberries while Roxie ran around with her best friend, Murphy, and one of my troupemate's children picked blackberries and fed them to the puppies. Seriously, the love is out of control.

We're going to stay over tonight and just take turns holding him. Dr. Newman, one of the ICU doc whom we love, heard about his night and said she just thinks he wants to be held. We were pretty "attachment parenting" before all this, so I'm sure sleeping alone in his bed all night is a rude shock. I think that's the thing I miss most right now- I love just throwing him in the orange sling and walking around with him, snuggled against me, watching everything passing by until he falls asleep. I keep going on little walks around the neighborhood near the hospital and thinking, "Oh, I can't wait to take Shimmy on this walk" and then realizing that that's not going to happen any time soon. Ah, that it were so simple as an IV pole.

My goal is one thing removed every day. They took him off the positive pressure oxygen, which basically means he's now breathing on his own, without any air being forced in through his nose. Which reminds me of a really funny thing that happened in the first few days here.

The nurses were changing shifts at one point and our nurse was giving the new one all the relevent data. The new one asked if he was on "Roumaire" and our nurse said no. I knew he was on a lot of meds, but didn't remember hearing about that one, so I asked what Roumaire is for. She looked at me funny and then, realizing my confusion, said, "Room air". I just about fell on the floor laughing. Reminds me of a funny story about my stepdad and lasagna, but that's for another day...