Wednesday, January 7, 2009

Update for ShimmyLa

So we're 24 hours into not feeding Simon and he's not eaten anything by mouth. I can't say that I'm not surprised although I can say that I'm terribly disappointed. I didn't even know how much I was holding on to the idea of him getting hungry like he did with his last bacterial infection and drinking like a rock star. He is for sure still my little rock star and I am also clearly not nearly as close to being Buddha as I thought. I so wanted Simon to clear this last hurdle of looking and acting completely healthy.

I can handle that his Echo still shows him to be a very sick boy. I get that. I'm not forgetting it. I just love getting to live in the present with him when it's so lovely moment to moment. He is hysterical with his tongue, affectionate with his hugs and the laying down of the head on my chest, his new sounds crack me up, and his wiggly body is just yum yum yummy. That is where I live.

So this was the last hurdle in getting to live in the moment with him and it probably made it worse that I now have lots of images of friends babies (a month younger or older than Simon) taking to solids and sippy cups so beautifully)

Breathing in, breathing out. Breathing in, breathing out.

Yeah, doesn't help. I just wanted him to eat by mouth, continue to gain weight, cancel the G-Tube surgery, and have his sweet face back. Yesterday.

I'm ok. It's not happening today. It's probably not happening tomorrow and most likely we are moving forward with surgery scheduled for January 23rd.

In fact we are moving forward with a more conservative surgery approach than previously expected but one that I think is in Shimmy's best interests.

So HunkyPants called me this morning and let me know that he had conferred with Dr Rosenthal down at Stanford as well as Dr Su who would be performing the surgery and they think this is the best plan:

Have Simon be admitted on the Wednesday before his surgery, stop taking his Cumiden (blood thinner) and Carvedilol (heart med) and start him on Milrinone and Heparin again. Have the Surgery on Friday and then wean off those two drugs again for two days and be out by Monday. So....6 days back in the ICU. No deep line just a simple IV and all the nurses (and Dr Patel who apparently asks Rosenfeld about Simon a fair amount) can get their fix.

I can't deny that I'm having some reaction to going back in for that long but exactly what it is, is not simple. Terrified that we will once again be around very sick germs that love to make my son bacterimic, frustrated that I don't get to control his basic environment again, happy to get to see all of our lovely folk and have them see Simon, and just freaked out that we're going back to the Hospital.

AND how the fuck is it all going to work?! We have a routine at home now. We have wiggle room- literally.

Should be interesting. So...that's the plan right now.

Simon had a great day though. He was happy and active. There was some fussiness in there but he never really got to the "I'm frikkin' hungry mom and I don't know what to do about it" state. We even pushed his bedtime a little with an exceptional dinner at A Cote to celebrate Jaime's birthday, my mom's birthday, and Ed's birthday. Also yum yum yummy (special shout out to Lainie the manager there who baked us a special dessert for celebrating). Holy Chocolate Cake. We took most of it home so come on over if you want a chocolate experience like no other.
What should we order Mama?
Sweet right?

As for me, Gallbladder infection under control. Still not feeling 100% but 75% is better than last week. We're putting off surgery until the infection is long gone, at least a month, and then bye bye Gallbladder. I asked my surgeon if I could at least keep the stone to make a rattle for Simon. Negative. Pooper.

I think that's all for now. I'm a little hopped up on Chocolate and need to watch Top Chef to come down. Simon was so tired that we just put him to sleep in his dinner outfit- apologies to Jaime in regards to the late night diaper change.

Love to all


Fred said...

You three are still my hero. I swear, if ever I need a lesson in "how it's done"...I need travel no further than Casa Shimmy ...his moms are the masters! I learn at their feet.

Jen said...

I bite their toes. Hee hee. You know, the whole eating thing can be challenging with a kid without special needs. I know it's disappointing that he didn't eat, but don't give up!
Love you guys

Sara said...

Mmmmm... A Cote... sounds like a lovely celebration!

Why can't you keep the stone? That is seriously lame.

Sol said...

My suspicion is that like a true Fitch-Jenett, he'll start porking out big-time once he discovers dim sum. Mmmmmmm. Pork, shellfish, and more pork. Grease, starch and trayfe. What's not to like?