Wednesday, May 6, 2009

A bug was bound to happen

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So it's here. Simon's first real bug. It was bound to happen eventually. I was feeling it starting for me Sunday evening, and by Monday I was really feeling crappy/achey but worked extra hard at drinking water, pounding echinacea and vitamin C and taking it easy. By Tuesday evening I was feeling much better and hoping that my washing my hands every five minutes maybe, just maybe, kept what ever I had from passing on to Simon.



No such luck.

Of course.



We live in the same house. I prepare his formula, his medications. I change his diapers, wipe up his spit ups, hold him close when he's upset, etc etc.



So by Tuesday afternoon when he had his first sweat going down for a nap I knew we were not in fact in the clear.



By the evening we were seeing his nose run (clear at least) and hearing a more regular cough.



F**K



Would this be the cold or virus that would send us back the hospital?



We called CHO to check in with the Cardiologist on call just to get more of a sense of what to look for in terms of Simon needing more care than we could provide at home. A spiking fever, respiratory distress and continuous vomiting.



Ok, we're nowhere near any of those so Jaime and I can both relax a little.

A little Tylenol and except for brief wake up at 4:30, Simon slept really well and showed no increase in symptoms this morning. Except for going to sleep 30 minutes after his 8 'clock feed he seems to be doing fine.

I hate how a simple cold means an avalanche of thoughts and feelings for Jaime and I.

It doesn't feel so much like anxiety but just this ticking down of all the things that it could bring and where our path might be turning. Could be an abrupt turn to a new (or old) state of care for Simon or simply a slowing down on the path that we've been on (more naps, less activity and outings), or something entirely different that we can't imagine because there are still so many unknowns with the way that cardiomyopathy works.

I'm breathing well.

So is Simon.

Yay for the little things.

I also like hearing from HunkyPants "oh, he'll likely motor through this the way that he has".

It was great that he was the cardiologist on call last night when we phoned in.

He also let us know that our next prescription refill for Carvedilol will be an increased dose.



That's exciting.



We didn't get a chance to go into it but I'm making the assumption that Rosenfeld called Rosenthal down at Stanford and they thought this might be beneficial to Simon's heart growing stronger.

I'll take it.

Just checked in on the little man. He looks and sounds like he's sleeping the deep and necessary sleep of someone fighting a bug. Comfortable and deep. Way to go Shimmy! I think he knows that we'd really like to get away this weekend and he's doing his best to be ready for it.



We have a long weekend with Jaime taking Monday off so that we can fully enjoy a Mother's Day/ Birthday weekend up in Gualala at Jaime's mom's cabin. I love it up there. Simon had a blast when we were last up there for the Winter Holidays. Roxie loves the beach. I love the Ocean and the quiet. It's sweet sweet family time. Kind of like agave sweet.



We just tried agave syrup for the first time (thanks for the recommendation Amira) and it's super yummy sweet but not rot your teeth kind of sweet. It's got a little bit of layering to it like a really good, not too heavy Creme Brulee' that leaves you with that hint of burnt caramel taste. It doesn't take over your mouth but instead leaves you feeling like you just woke up from a great dream and are ready to enjoy the next day of your life.



I feel like that a lot with Simon. I feel a lot of other things with Simon too and agave sweet is what I mostly feel with Mr Simon. I hope he does too.
Sure seems like it most of the time.
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Heeeey

2 comments:

Kristine said...

what a beautiful metaphor...agave sweet...

wishing you all a wonderful getaway.

Mom to Be April 09 said...

I feel like you are reading my mind when I read these posts! Mackenzie had an episode of projectile vomiting tonight and choked a little and I just broke down thinking "this is it...she's going to stop breathing and we'll have to call 9-1-1." Then she was past it and all was fine...she ate like a champ after her bath. Its just so up and down sometimes. Our Dr. at Stanford is Rosenthal...and Mackenzie just got her carvedilol increased last Thursday...so, we're running a few weeks behind you, but are in similar situation! Again, thanks for sharing your experience on this blog. It has really touched me!