Wednesday, August 5, 2009
One step back...forward? (get comfy, long one)
It's been an interesting couple of days with PopPop and MM heading home, GI appts, new antacids, 4:00 hour wake-ups, and starting homeopathy.
Simon said goodbye to his East Coast Grandparents on Monday. It was incredible to watch him take in this particular 'goodbye' in a different way. I've never seen him watch folks leave the same way that he did my mom and Dad on Monday morning. He did not break his stare on either of them the entire time we were standing and saying our goodbyes, to watching them cross the street and get into their car, to following the car all the way down the block until it turned out of site. It was a little heartbreaking and a lot beautiful to watch. He's 'getting' so much more these days.
Our GI appointment was uneventful except for that Dr Gleghorn said that Simon was "perfect". Yay! We're working on getting off the antacid that interacts some with two of his heart meds and giving a milder one a few more days to see if it works. I'm afraid that after his first night on it, and a 4:32am wake up/barfing session, that we might need to get back on the first one. Yes, Simon is on the same antacid medication that his Grandpa takes. Such a little old man toddler we have :-)
I know it's terrible and exhausting but there is a part of me that loves those early morning wake ups. It's not so much formula left on his overnight feed that we can't make it up during the day (and Dr G said that while he's perfect, he'd still be perfect if he lost a little- bound to happen I'm sure as soon as he starts walking) AND if it's early enough in the morning (not like 2am or even that rough 11pm wake up/ barf session) then he gets right into bed and snuggles down for a couple of hours.
There's not much sweeter than a Simon Lev in your bed, head tucked into your neck, turned mostly horizontal in the bed, right arm flapping every few moments thwacking your face as he falls back into a deep slumber. Deeeeelish.
Besides that it's been a week of getting back into our groove with Simon taking nice long naps during the day, swimming at the Berkeley Y and oh yes, scaring the crap out of his mommy today with what appeared to be some decompensating symptoms.
But I get ahead of myself.
Let me go back to Friday July 31st.
After waiting two months for an appointment with Dr Roger Morrison, apparently one of the best known Homeopathic Dr's in the country, we had our two hour session. He is a lovely man who clearly knows his western medical jargon (he happens to also hold an MD). But it wasn't until the end of our session that I had the most interesting exchange with him.
He told me a little about the remedy that he'd chosen for Simon, based on a lot questions for me about my pregnancy and Simon's first 4 months before his hospitalization and mentioned how the next several months would go in terms of a working relationship with him/ homeopathy.
He asked when our next Echo cardiogram was (in two weeks) and said "well, we might not see the change that soon but when you see the change in the following Echo call to schedule your next appointment."
He didn't say 'if', he said 'when'.
It didn't quite hit me until we'd left his office but that's what he said.
What if it's true? What if this can really speed up Simon's slow (I mean really slow) but steady recovery? I'm not living in the hope because it's too exhausting (day to day is how we roll) but it's there. It's out there that there is a Dr that has full faith that what he has prescribed for my son will help his heart heal.
I love that.
I can't live there...but I love it. Once every two months is enough right now to have that intense hopeful feeling that "maybe this Echo will show drastic improvement...maybe it's this one...maybe Rosenfeld is taking longer coming in because he's gathering all our team to deliver the good news...maybe".
Yeah, every two months is hard enough.
Aside: What kind of fucked up disease has that kind of spread in it's prognosis- at any given time there could be drastic improvement, sudden cardiac arrest, or no change at all. THAT is messed up!
So anyway, our remedy arrived in the mail yesterday and we started with it fresh this morning.
Simon took his remedy, diluted in water like a champ (a champ with some gagging) and I figured that this was just another bit of mixing and administering that I would add to our already impressive med area in the kitchen.
And then it happened. I was putting Simon down for his afternoon nap and as he fell asleep in my arms I felt it.
That terrible familiar dampness that only comes when he's falling asleep. A cardiac sweat.
He was also breathing just a little harder than normal and I thought that I heard the faintest of faint wheezes.
After I put him down I sat and listened for a while and relaxed a little as I heard his breathing become silent. He seemed to dry up as well and with only about a tenth of my body frozen with fear, I left the room.
I don't know whether it's kismet, fate, or just great timing but my mom happened to call just then and as we were talking she asked if his remedy had come in the mail yet. I told her yes and she asked me to remind her what the name of it was since neither of us had really heard of it before. She was driving and so couldn't do it herself but she asked me to look it up online and see if it was in fact of the Arnica family (something we both thought that Dr Morrison had mentioned- still don't know). Right there in the first paragraph, talking about what it can do, it says " Its action is shown on the heart first quickening, then retarding it."
Riiight. Homeopathy can sometimes increase the symptoms that it will eventually work on getting rid of. My mom reminded me of that and Jaime confirmed it again when she came home.
Now that doesn't mean that I'm not going to keep a little extra attention to Simon's heart rate and overall being, but I have to say, I have a good feeling in my gut.
Unless of course Simon is in fact decompensating and then I'm going to feel terrible but really...we've been told that he's stable and we're not likely to see that kind of decompensation without something significant happening for him.
So without exhausting myself, I'm going to call Dr Morrison tomorrow and check in, sitting here in hope. Just sitting, legs comfortably crossed, glass of water nearby (ok maybe Diet Dr Pepper), reading material on hand (those of you that know me can guess what it is), and just wait.
I will continue to enjoy each day, draw his meds, work to minimize the barfing, marvel at his development, laugh at his new sounds and facial expression, and add this new remedy that may in fact be making my son's heart stronger.