Boring is Good. Therefore...

I'm getting double vision doing this task at work and I feel this vibration through my keyboard. Looking over my post-its pile, I see my cell blinking and shimmeying across my desk. Bother. I see Jose's number and sigh as I take off my headphones.

"What." I say flatly. It's just past 4. I told him it'd be between four and five, closer to five. "Yes. What is it?"

"What are you doing?" He asks.

"I'm winding down."

"When are you coming home?"

"Shortly. I said between 4 and 5."

"Well, Bo's line has a hole in it."

Shit. Can't think. Can't hear anything. Lights get brighter. Must be my eyes dilating. "I'm shutting down my machine. I'll be there shortly."

"Should we meet you at the ER or go to Leinwand's?" he asks as I'm googling Bronson Leinwand thinking, I can see myself handling his card and putting it down by the card catalog right by the door, even just last night. Why didn't I slip it into my handbag instead? Why? Was I feeling overly confident? Smug even?

"I'm calling them right now. I'll let you know what they decide." As I hang up, I shoot an email to my group, vaguely urgent, but no "!" or flag, poor punctuation, probably incoherent. Command the machine to shut down, and wait on hold for the surgeon to tell us where he will see us. I feel my eyes stinging. Where did those fucking tears come from. Come on, give me a break. It's close enough to the end of the day, why am I getting that look? Who cares. Get to the car. Get a file in case I need stuff to do. Movemovemove. Shit, forgot all those printouts for working at home...

The minute I step in the door, I get a wall of words. Why is she talking in Aramaic. Why aren't they in the car and turned around in the drive?

We bring our own sterile-packaged repair kit. Bo gets a dose of oral sedative (Versed). He gets loopy and plays with Tom Trains in the playroom on the peds floor as we wait for the surgeon to come back. No one wants him screaming the way he did last time. I explain that his broviac is broken and Dr. Downing is going to fix it.

"Dah Doew-nee."

"That's right, Dr. Downing."

We get home in time for some Thomas & Friends and a decent bedtime.

So... it goes.

Chicago Update

http://www.feldenkrais-shelhav.com/home_en.html
This link is if you want to know more about Child'Space than it is a Feldenkrais musculoskeletal experiential type of physical therapy for children with developmental delays, and for encouraging higher skills in typically developing children.

We spent a long weekend in Chicago at Tio and Auntie's in Andersonville. THANK YOU! Bo napped well the whole 5 days/4 nights, but woke once each of the 1st 2 nights. Then when we got home, he decided on a nap boycott (!). I know.

He is working on jumping, hopping, skipping and walking up and down stairs. He's still climbing stairs on all 4s and going down them backwards, likewise. Other milestones seem to be on track or ahead. YAY!

We weren't successful in our recent attempt to wean his hours. We jumped back to 18 from 20 hours. So we will try again in a few weeks to wean just by a half hour this time. I was quite disheartened at first and felt myself sliding back into depression, but with some carb-loading, meditation, prayer and lovingkindness from friends and family, I think I turned that back around.

I discovered a Saint who likes to heal children through what can only be described as a destined meeting: Padre Pio. So if you feel up to praying for Bo, or if you've already been doing so, asking for his intercession and a cure would be appreciated.

Since Bo hasn't been putting on weight or height, we will get an endocrinologist consult Friday to see if his treatment is missing something. We're also going to try to catch the sp4449 steam engine on its way home to Oregon, that day, but the schedule is hard to determine.

more pix tonight!

The Evil Train Table

Love/hate relationship with the Train Table at B&N. So many trains, and so many products...

2nd haircut following the 3 hot days we had all summer

I follow the kids on the right so closely, I can see them in my sleep. Maybe it is obsessive. I should ask my counselor what she thinks. Except I don't think my behavior would change regardless of her feedback. But each of their triumphs give me a little more hope and each of their setbacks reminds me what is at stake.

Our friends from Wisconsin are finally home.

And it makes me want to go and prune the hell out of my fb page, and all the insidious "before" it represents. But. I can't bring myself to do it. Because the before and the after are still the same me. So I work on reconciliation.

Father Ken's homily somehow made that word both much bigger and much more accessible than my jumbled thoughts here. But I left mass convinced that it was something worth trying. Something I may not succeed at, but something worth doing.

Wolverine!

All done.

2 Birthday Parties for 2 year old Bo

These are pix from Bo's 2 birthday parties on and the weekend after his birthday (June 3).

Oley Minutes, Part 1 (no sterile dressings in EU?!)

I ran into these Dutch researcher who basically reduced line infections to near zero with Taurilidine locks. Their paper was presented at Oley, received the research award. This looks like a good option for those of us either: 1) not a fan of ethanol and its corrosive effects on lines, 2) not a fan of heparin and its freaky possible contaminants, or 3) still experiencing too many line infections with whatever protocol to be happy.

But more interesting to me was the conversation I had with them regarding AV fistulas and dressings. Apparently, none of their 100+ TPN-dependent patients (The Dutch population is in total ~16MM) use dressings at all. They claim that they have a much lower rate of tunnel infections because of this. Yes, the line is just hanging out there in the breeze, or shower, or pool, or whatever (!). I know, right?

And not to sound like I'm maligning the UK, but I've been in contact with a family from there who was trained to clean the site with normal saline and then stick a tegaderm on top. The child is 8 months old and has had 5 site infections. Sounds like the worst of both worlds to me. Yikes.

And as for AV fistula, they say that it's up to the patient to decide if they want a port, a broviac or an AV fistula, but that the fistulas have a lower rate of line infection, and that when the needle is removed for the day, it's just, well the arm that is there. But that the decision really depends on the patient's dexterity with the other hand and so forth.

Quiet = Good

I'm still digesting and savoring the sweet Oley week we had. I'll post my minutes here in a formal blog in the next week or so. Let me just say, that I had a weirdly resonant moment when someone asked me if I learned alot, and what. I flashed back to a job interview for a project manager position and one of the team members asked me what the most important time in a meeting was. Even though I had never been a PM, I instinctively said the gathering and commencement moments before and after the formal meeting, "That's where you hear the most important information, see the most important interactions (verbally and in body language), and sense the life of the project." Still true.

Spending time with the Cyrs, the Brogans, the Nobles and all the amazing long-timers both young and old was uplifting. I nearly cried into the lap of a younger hipster with a G-tube. He was so self-sufficient, so matter of fact, so aloof, yet so compassionate. Someone I hope Bo will be able to look up to for a long time.

Rennie and Jennie kept Bo amused so I could attack multiple sessions each day. And even though it poured rain every day but the last, with threats of hurricanes, and even though we ate way more hotel food than I had hoped, we all had an amazing time. Bo was already aware that the other attendees had lines of their own. He pointed to his line and showed it off to a 15 year old, who in turn, showed Bo his line. So he had no interest in the daycare (too young for it to be amusing for long)? He had fun chasing Rennie and Jennie. He slept through the night each night, took nice naps daily and only cried for a few minutes for each airplane's descent. Good Boy!

Summer ramp up has kept us busy. 4th weekend with my parents, this weekend is my niece's 3rd birthday and family from Detroit and NY are visiting here, Bo's godmother and her husband will breeze by the following week (which will be a grueling combination of kowtowing and chauffering our Japanese agent and customers), and the following week is a Childs'pace workshop in Chicago. Whew! It'll practically be August by then. Where did the summer go?!