Saturday, August 8, 2009

ER- a one night special not the series.

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Almost exactly 24 hours ago we got off the really old school classic wooden roller coaster we'd been on, just like the Giant Dipper at the Santa Cruz Beach Boardwalk, (an up and down ride for sure,) and got on one of newer fangled roller coasters that are not very much fun at all.

This is coming from someone that loves the actual roller coaster ride. I'm not speaking metaphorically here. I love roller coasters.

Most of them.

I remember once....don't worry I'll get back to the story in a minute....I went with Anna and Hilary to the nearby amusement park, the one that has at least 6 different coasters to ride, and we were determined to try each one.

I remember the first four as being fun, familiar, and exhilarating even.

Then we tried two of the newest ones at the park and things changed. One was short with straight up and down track at either end and twists. It went too fast and seemed like it's intention was just to make you sick. The other and last one of the day seemed like a regular ride but there was something about the way that you sat and the speed and the turns that simply hurt. My neck was out for about a week. These last two were supposed to be the newest and most desirable of the coasters at the park and I left the day feeling like my relationship to roller coaster riding was forever changed.

Back to the metaphor.

So I know that we've talked about this 'ride' before and all the ups and downs blah blah blah. AND, we've been extremely lucky that for almost the last 7 months straight we have not had any hairpin turns or have the ride all of a sudden go in reverse. AND, while I can say I love roller coaster riding, no one wants to do it for a whole year or more.

24 hours ago we got on one of those other roller coaster rides. Not that much fun, downright miserable in fact. Thankfully it was short. Intense but short.

If you've been reading you'll know that for the last couple of days (almost a week and a half now) Simon has been having trouble with his overnight feed and we've been having success (or not) with various antacids. Well, Thursday night we went back on Prilosec and still, Simon woke up at 11:30 retching. By 12:45 I had dropped his feed rate down, and held him upright, with no success so I just turned it off.

Once again I started spinning about how much nutrition that meant he wasn't getting and didn't fall asleep myself for another hour.

Roxie, love that dog, woke me up at 2:30 needing to go out to eat some grass to soothe her own "I'm a doggie and I eat things off the street" stomach.

Another hour spent trying to get myself back to sleep and then a 5:30 a.m. wake up for the little man who started retching again even though he'd not been on his overnight feed at all since 12:45.

Not a great night.

Jaime was in Sacramento too so I didn't even have my snuggle partner to share expletives with.

The day did not get any better with Simon being clearly exhausted all day and while the morning feed did not go exceptionally well, by the time the mid day feed came 'round it was clear that something was really off. We had gone for a long dog walk and while Simon is usually really talkative while in the backpack, he was almost silent and just kind off dozy.
Then came the mid-day feed and nap time.

Simon barfs. We know this. Every once in a while we have a day or a couple of feeds in a row where there's no barfing but since the morning went not so great, the fact that the noontime went even worse made me start to feel like something was not right. He didn't even make it 1/4 of the way in before the retching started. In a world where 'not quite right' is the norm, when something seems off from there....and it's historically been really bad (think sepsis in the hospital) it's time to start moving into action.

I started to make phone calls and after about 30 minutes of Simon not sleeping and confirming that he was 'off', I had had conversations with both his GI Dr and Cardiologist, we were headed to the emergency room at Children's Hospital Oakland. Simon had not kept anything down for over 12 hours and was more than likely dehydrated among other things. It's not worth it with him to wait, so we headed in for an Echo, IV fluids, and a full blood work up.

I texted Jaime on our way there and she was able to head home from Sacramento early.
Luckily, when we got to the ER there was only one family waiting before us and within 10 minutes we were in a room having been triaged and waiting for the ER resident. Dr Rosenfeld had called ahead and we got an Echo and consult with Dr Curio (the Cardiologist on call) even before Jaime arrived two hours later. By then we had figured out that it wasn't Simon's heart (they even thought that the Echo looked a "little better" than it had in June) but we should do an X-ray and a full blood work up just to be safe. Dr Curio even intimated that we likely wouldn't need to be admitted since we live so close and a bolus of IV fluids could at least hydrate the boy and give us some options over the next couple of days.

When we got back to the ER, from the Echo lab (the tech was a little shocked when I said I knew where I was going) Jaime was waiting for us. I caught her up on where we were at when the nurses came in to start an IV and get a blood draw.

Here's where the story gets going more like a Fitch-Jenett CHO visit.

First Jaime comes back from getting water and tells me about the nurse that gave it to her. A younger nurse that sassed Jaime right away as being "high maintenance"-jokingly. Then that nurse and another come in to do the blood draw/IV placement. Right away I tell the older more "in charge" nurse that Simon is a 'hard stick' and that I usually hold him in my lap. As she replies somewhat defensively(and tells me to get my shoe off the bed) that she'll need to lay him down on his back, Jaime notices a strong accent and right away asks her where what part of Massachusetts she's from. This breaks ice immediately and all of a sudden we're talking about western mass, strong accents, and the strange tradition of adding 'r' to the ends of words where it clearly doesn't belong.

Two minutes into it and she says "wait, are you both his mothers? That's so cool!! You guys are so different from each other." She then goes into how both her sisters are lesbians, one of them "more like you" (referring to me, Laura) and the other "is more like you...a lipstick lesbian". This last term was only employed after I gave her permission to use the term 'butch' for me freely.

From this moment on and for the next four hours it's like it was an intimate affair with friends and all the perks and privileges that come with that kind of intimacy. I was allowed to hold Simon during his blood draw (first try thank goodness), we were told to go get dinner and feel free to bring it back to the room, we were kept alone in a double room and allowed to turn the light off so that Simon could sleep once the IV was started (even though the ER got super busy) and last but not in any way least, Betsy- the nurse from Boston, told us something very special about the other nurse that was helping her/us with the blood draw once she was out of the room.

She has cardiomyopathy.

For reals. What are the chances? This is the same nurse that jokingly sassed Jaime, that we already have a rapore with and like a lot. Betsy told us that she would ask her colleague if she wouldn't mind coming back in and talking to us about it.

When she came in a few minutes later she told us her story. She was in her 30's but contracted DCM when she was 11 from a bad case of strep throat. She'd had open heart surgery twice to replace valves and was still on some of the medications that Simon was taking. Both Jaime and I got to ask those "how did you feel?" or "what was it like for you when...?" questions and just like with Mo and Cynthia, got another glimpse into a possible future for Shimmy.

This was just another way that we are so lucky and provided for when the chips are down.
Yes, we had to spend 7.5 hours in the Emergency room. Yes, Simon had to get poked and work his way through some kind of crapola making it's way through his little system. Yes, we had to wait hours just to hear that his bloodwork was coming back normal.

{The best was when his Resident came in to tell us about his chest x-ray
She: "So, his chest x-ray came back. Um... it looks normal...(pause)...except pause)....................."
Jaime: "His very large heart?"
She: "yes, right (nervous laughter)."
This was preceded by me telling the resident what blood tests to order for Simon, adding on two tests that she wouldn't have even thought of ordering but given what new meds I know he's been on would have needed to be ordered at a later hour anyway.}

I'm not getting paid enough.


At this point Geralyn (one of our regulars from the ICU) comes down on her break saying that word has reached the ICU that we're here and that we might be admitted. This is news to us since we'd spoken with Dr Curio, the Cardiologist on call who knows us pretty well and said earlier that he'd be more than comfortable sending us home given how well we've been taking care of Simon and how close we live. I share this with the resident and she leaves to double check this new bit of info.

Admission averted.

By this time Simon is sleeping comfortably given the IV fluids and is almost an hour in to a slow feed with no retching. (Huge shout out to Dre and Joan for coming by right away and then coming back with home supplies).

Another hour and we are home with no concrete information on why the little man had been having such a time of it but home anyway with Simon continuing to tolerate a slow overnight feed and immense gratitude to be home in our own beds.

Today has been a good day. Not great for sure but really really good. We had a little indication that Simon is in fact fighting some GI bug since the late morning held a monster blow out in the little man's diaper AND that it's passing as he's been much more his old hysterical, smiling, babbling self.

I will say that tonight before putting the little man to sleep (he's not asleep, let's be clear, it's 9:44pm and we're still in the chatty-kathy bedtime space) he did drink more than I've ever seen him take by mouth since we've been home. Apparently some hot weather and some Odwalla Blueberry C Monster work for him. Tablespoons I tell ya!!

Tomorrow is another day and we'll continue to hope that he holds down his Pediasure. I love the weekends and family time. I love that it's not his heart. I love that we are held in such care from people that have know us for years, months, and even hours.
I love that we are home.
I love that we are home.
I love that we are home.

I feel rich beyond belief.

Most of the time.

I mean c'mon, it was a seven and a half hour trip to the emergency room.

"ER ShmeeR. Look what I can do!"

"Dude! How cool was that?"

Wednesday, August 5, 2009

One step back...forward? (get comfy, long one)

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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.