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

Tuesday, January 6, 2009

Uncommon Baby

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Sorry to leave everyone hanging- we have Laura's family in town and it was my birthday yesterday (it was great!) and we just didn't get a chance to blog.

Laura has a consult tomorrow with the surgeon re: removing her gall bladder. Her infection seems to be getting better because she's less uncomfortable so we probably have some time until she needs to get it out.

Simon had a cardiology appointment today and Laura managed to get a consult with the surgeon who would do his G-tube. The surgeon had a little come to Jesus with Laura about the seriousness of the surgery. Here's Laura:

Hi all

Sorry to be lax on the blogging as of late but it's not my fault. Talk to my Gallbladder.

Shimmy and I arrived at CHO at 9:50 ready for our appointment. While waiting for our first activity (the Echo) Simon was pretty happy and excited with his tongue sticking out in all kinds of directions. He also got to watch a full 10 minutes of animated dinosaurs on the fancy plasma TV in the waiting room and was loving it. He was amazingly relaxed through is echo and Sarah the tech let me know that really there was no obvious difference. (However, Dr Casey, who popped his head in to say Hi said "looks like there might be more of a wiggle there eh?")

We then headed back to cardiology and were almost immediately put in a room to wait for Howie (Aka HunkyPants/ Rosenfeld). We had to wait almost 20 minutes (what? Like he has other patients??) and Simon got weighed (18 pounds 3.5 ounces my friends!!) and then proceeded to go crazy with excitement at getting to play with those eye and ear checker thinger magigggers. He was cackling up a storm, rolling his tushy off, smacking his lips with a kissy sound, and generally having more fun than any cardiac patient ever should at an appointment. Luckily Howie got to witness the last little bit of it (he found it terribly endearing that Simon was blowing him kisses and I didn't have the heart to tell him that it wasn't really a kiss specific to him) before we went for the 'Oww' part of our visit.

But before I get to that, let me tell you the most exciting part of our time with HunkyPants. He said that Simon was looking so good and that his weight was firmly in line with his height so.....we could start playing with his feeds and see if we could get the little man hungry!!! Yay!!

So tonight we are just giving him pedialyte and seeing if he'll wake up hungry enough to suck down some formula, nibble some avocado, or slurp some cereal. I'm a little nervous about it. Isn't that crazy?! I give my son several different medications that could potentially harm him if not given correctly and I'm worried about trying to give him food. Well, it has been months (except those weird days after his last bacterial infection) since he's taken anything by mouth AND it feels like the last frontier in terms of getting Simon deeper into "normal baby" life. I get why I'm feeling like it's so charged and it seems weird to me.

On to Lab draws. They suck and I hate holding him while the very skilled nurses try and try to get blood from my small veined son. This time only took two tries and the most amazing happened during the actual blood draw.

Shimmy was screaming his head off, tears falling down his sweet little face landing on my hand that is holding his small body still, while Trudy filled the numerous vials for his numerous tests. At one point, with the needle still in, Simon's attention was caught by the movement of the 2nd nurse changing the blood filled vials for empty ones. For a solid 4-5 seconds Simon stopped crying and simply watched her move the deep wine colored vials around. It was incredible.

I told him "yeah, it's ok to be distracted and really once the needle is in, it doesn't really hurt, it's the going in that hurts." At that point Trudy had to move the rubber band around his arm and the wailing and tears started up again, with good reason I think. But, it was an incredible moment of Simon being aware of what he was actually feeling and not just riding the wave of what had transpired. Very cool in my mind. Again, his bounceback was almost immediate once we were done and he almost smiled at the nurses as we waved goodbye and thanked them for the most unpleasant job that they do really well.

We then headed across the street to outpatient services to meet with Dr Su who will most likely perform Shimmy's G-tube placement surgery. While we were waiting to meet with her (it was an impromptu consult that she agreed to over the phone- she was on call and not in her office) Simon fell asleep and I covered him up in the stroller with a blanket. She came in and we started starting quietly as to keep the little man asleep. It was already 1pm and he was completely off his rocker with exhaustion.

Dr Su started in right away with some very clear concerns. She said that she'd talked to Dr Gleghorn and Dr Rosenfeld and while she heard from them that they thought Simon was a fine candidate for such a surgery she "really didn't want to do it."

She went on saying that she'd seen his Echo and remembered him from the ICU (she was the surgeon to take out his Broviac line when it was infected) and was very worried about how sick his heart was. She went on to say that any surgery right now given that was a serious risk and that the worst case scenario was that being put under anesthesia could kill him.

Words like that make my heart freeze and feel leaden in my chest. It wasn't anything that I didn't know or that Jaime and I have talked about but she was no joke and shooting straight from the hip. She went on to say "Dr Gleghorn and Rosenfeld told me that they don't think it such a big risk and that really I needed to see him and meet with you but I have to tell you what I think." On she went, "They both told me that I shouldn't put so much on the Echo since nobody thought Simon would be around this long especially after you both opted to not go the transplant route but here he his and not only here he is but he's doing so well...."

(This came up more than once in our conversation- I don't know if I hate hearing that or love it).

At this point Simon started to wake up and start fussing. I removed the blanket covering him and picked him up from the stroller into my arms. "Oh my, he looks good!" were the first things out of her mouth when she actually saw him. "He's gotten so much bigger and his cheeks are so big and full of color." She went on and on cooing in his general direction (you gotta remember the last time she saw him he was bacterimic and almost buying that farm that he's been toying with purchasing for over 5 months). She said that given how he looks and acts, we could move forward with meeting with a cardiac anesthesiologist and scheduling the surgery but with a couple of weeks of seeing if we could get Shimmy eating by mouth that hopefully we might not even need to put in a G-tube.

The little man works his magic again!!

Later in the evening Dr Gleghorn called to check in on the progress of scheduling the surgery and when I mentioned the whole 'maybe not needing it if we can get him eating' thing she said, "that would be uncommon for a patient to be able to get back to eating." I said, "well, he is an uncommon baby" to which she replied, "well, yes, given his history, he certainly is".

Like I said before, it's both wonderful and hard to hear that. Especially coming from medical folks that really know what they're talking about. Simon is so alive right now, in his body, in his energy output, in his wiggly tongue AND he is not that far from being just the opposite. His heart, held so carefully in his beautiful strong little body is still very, very sick. It's hard to reconcile his amazingly strong legs and arms, head and neck, great grasping hands and curling toes with the idea of a stretched, weak, inconsistent but so very essential heart muscle.

He is an amazing being that keeps everybody around him so viscerally holding the notion of balance. In every moment there is light and dark, sweet and sour, joyful and sorrowful. I love him so fiercely for that and so many other things.

Today's highlight was the teething biscuit. Check it out:

Love to all


Sunday, January 4, 2009

Photos from the last few days

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Lovin' the family visits
Yes, I'm doing yet another dental exam on PopPop

Ooops, sorry mom. I didn't mean to throw up on your chin. But hey, that's better than in your mouth right? Count your blessings woman!

I love me some cousins

Oh for cryin' out loud, are we back to this hair style?!

Dim Sum is Grrrreat!

Oooooh Scallion Pancake

Hey this chopstick isn't bad either

I'm french and I stick out my tongue at you

Hey is our table ready yet?

Simon seems to be thriving. Cardiologist appointment on Tuesday. We'll update you of course.
Love to all