Saturday, January 31, 2009


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We took Simon to the Oakland Zoo for his first time today with one of our favorite nurses, Kathy. He seemed to sort of enjoy it. He mostly liked the Squirrel Monkeys who were racing around.

He got his first lesson in the birds and the bees with the giant tortises (very slow and not very well aimed, I have to say).
He wasn't so sure about the goats in the petting zoo.

We're so excited to keep going and are really looking forward to the time when he gets excited about certain animals and really starts to watch them.
Until later...

Wednesday, January 28, 2009

Wait for it....

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My son has Cardiomyopathy.
He spent 4 months in the ICU.
Nearly died twice from bacterial infections.
I had my Gallbladder removed last week.
Simon had G-tube surgery a few days ago.
(Not to mention the motorcycle and horse incidents)
Today, Simon, Roxie, and I got rear- ended on the Freeway!!! (nobody got hurt- although I'm am a little nervous about waking up tomorrow with a wicked neck or backache)
What the hell is going on?
Who or what gods/goddesses have we offended?!
What have I or we done in a past life that has me working some real crap out in this one?
I'm sorry but all I can think about right now is holding up my special finger to the universe and saying "what the fuck?!! Quit it!!

Really, we're all fine save for the rear bumper on the Corolla.
Fuck'n A though.
Oh yeah, and I got my period today.

Tuesday, January 27, 2009

Getting Back

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We're home 48 hours now and it's another transition period like it was when we first arrived home. Not nearly as difficult a transition (4 days in the hospital versus 4 months) but still transition. Simon is getting more and more like his old self with each passing hour and it is simply a joy to have his whole face back. It's been 6 months seen we've seen that punum (face in Yiddish) and he looks like a different boy. My boy for sure but different.
He's definitely still in post surgery mode, waking up wailing from naps, wondering what the hell that feeling in his belly is, not wanting to be held close because of the pressure and discomfort it causes, and throwing up a little more as he acclimates.
I have to remember that I am a week and a half post surgery and still not feeling completely normal. He's just a few days away from it AND a baby with a heart condition.
We are just going to take it nice and slow for the next week or so. Both of us.
Last night when Simon had his 10pm wake up, he woke up hard and it took almost 20 minutes to get him back to sleep, I realized somewhere around minute 17 that I was in fact quite crispy. Simon needed to be bounced and oddly enough (read in sarcasm- remember I am post surgery too) that wasn't feeling great on my back. It took me way too long to agree to let Jaime be on duty and was in the unfortunate place of being ready to throw Simon at her and run out of the house.
Gotta get to that 'handoff' place earlier. It's hard though. I want so badly to be able to insta-soothe and when I can't the taurus in me digs in and just wants to stick it out and make it better for the little man. Clearly at my own expense sometimes and that's not so good.
You put the oxygen mask on yourself first and then put it on your little one. But please, that's just not the instinctual response.
So, we're inching, creeping back to what felt like a normal life before we went into the hospital on Wednesday-which sucked by the way.
Wednesday and Thursday were so hard. To once again be out of control of the basic things (noise, sleep, activity/mobility) was so much harder since we'd had a two month taste of what life could be like after our last Hospital stay. I felt my heart alternately breaking and raging. "This is not what is good for Simon" my head was screaming. He couldn't nap, he couldn't settle, we couldn't walk around, he got poked over and over (yes, once again they couldn't get a Picc line in). He had a board on his hand for his IV and then after surgery he had an additional one on his foot so he couldn't stand up (his new favorite activity).
Thursday was the worst until we moved from bed 18, right by the door, back to our old digs at #22. Huge Shout Out for Megan who as soon as she found out that #22 was being vacated, asked if we could move over. Another major shout for Carol who made sure that as soon as possible we got the ok to go out for a walk. Both things really helped both Simon and I turn a corner with our time in the PICU.
It's a complex mix of really enjoying the people, the support, the care for Simon, and hating, and I mean hating with just about every cell in my body, save for the rational few that can keep the big picture in mind, being back there, being out of control of Simon's moment to moment environment.
But I will say this- That boy is loved there. In the first two hours we were there, I think no less than 40 people stopped by bay #18 to say "Hi". He is a ray of light. Between Dance parties and conversations about accidents I think that Simon being in the hospital is a tremendous gift. How fucked up is that? So many silver linings on our journey so far...I think that somehow all of this was meant to be and there will be magnificent outcomes for all of us. It makes me a little nauseous to re-read that given what it means for Simon and Jaime and I to go through all this but I also guess somewhere deep down I feel it to be true. Maybe I need to cut back on the vicodin (haven't taken any today so maybe I should ;-)
Ok, Simon's sleeping so that means that I should finish my lunch and get my self to nap as well.
Huge love to all
"I am soooo ready to be done with this."
These cheeks are good for storing nuts during the winter.Or, freeze dried peaches as the case may be.

Sunday, January 25, 2009

Simon is Home!

Locations of visitors to this pageWe got discharged this morning at about 9:30 a.m . They wanted to get us the heck out of there and we were not about to argue.
We had a little drama last night with Simon and Carol saved the day. We left at about 7ish when he fell asleep and at about 9 pm Carol called us b/c Simon had been awake for about an hour, crying and was freaking out so much that his oxygen saturation was starting to get low. They gave him Morphine and he was still a crazy beast. By the time we got there he had finally fallen asleep, fortunately.

Carol said later that when respiratory therapist came by she begged them not to put a nasal cannula on him because Cardiology would be unlikely to discharge him the next day if they did. We just did some oxygen from a face mask placed next to him and he was great. I can't say enough for the nurses. They do so much for families and for kids. Carol knew how important it was for us all to get out of the hospital and fought for him to have appropriate medical care that would also protect our options for discharge the next day. We love Carol!!!



You can see his new G-Tube (we call it the Button) in the middle of his belly. Crazy, right? They also fixed his herniated belly button while they were in there. We're bargain shoppers, what can we say?