Sammy insists on labeling everything these days. Bedtime takes an hour because we go around the room, often several times.
“Pane?” “Yes, that’s the plane.”
“Bed?” “Yes, that’s your bed.”
“Noh?” “Yes, that’s mommy’s – oWWWWW – nose.”
“Neenee?” “Yes, that’s Uniqua.”
“Noh?” “Yes, that’s OW, yes, OWWW, let go of mommy’s nose!”
And so it goes until I realize I’m more of a distraction than anything else, and sneak off with the promise of checking back in in a few minutes. By that time, he’s usually asleep.
As I was getting him settled in tonight after the fifth time labeling the different trucks in the prints on his wall, he began rustling around the space between the mattress and his bed.
“Mimi? Mimi?” he asked, each time with slightly more panic in his voice.
So I traced the edges of his mattress until I found what he was looking for – and looks for every night – a little plastic Minnie Mouse, affectionately called “Mimi.” He took her from me, curled his Mimi into his chest and snuggled into the corner. And sure enough, when I check on him in a few minutes – or a few hours – he’ll be in some random weird position only toddlers think makes for comfy sleeping, his little hand tightly holding onto the very Disney we swore he’d never embrace.
Have I mentioned recently that my son, strange love of annoying little mice aside, is so.freakin’.cute? Yeah, I didn’t think so. And if I have, oh well, not apologizing, because man – as his language develops, he just keeps getting cuter and cuter. Seriously. So. Freaking. Cute.

Thanks for all your good thoughts!
Sammy’s heart looks and sounds great. We were concerned because he seems to get out of breath quicker and a bit bluer around the mouth when he’s out of breath. Of course, he’s a wild man who doesn’t know how to slow down, but Dr. Brown confirmed that kids with the Glenn anatomy will do just that – turn blue, run out of breath – the bigger they get. Something about the blood flow (and increased need for it with exercise) – but that Sammy’s body is doing exactly what it’s supposed to. Doesn’t make those wheezing attacks any easier on us, but at least we know that it’s completely normal. Now if someone could get my kid to sit still for a bit…
(For the record, when I say “turn blue” – I mean his lips look blueberry-stained and he gets blueish around the mouth. If you didn’t know what to look for, you might not notice it – but we do. I’ve heard post-Fontan parents comment on how “pink” their child looked. It’ll be bizarre post-Fontan to not have those darkish lips – I’m getting kind of used to them – I can only think that they’ll look so pale!)
His tricuspid valve regurgitation is still mild, thank god. And no, he didn’t take the EKG stickers the way I had hoped. Oh well. There was lots of crying and screaming and “I go!” pointing fingers at the door – but all in all, a good visit. We also got the okay to switch him from his 3x a day Captopril to his twice-a-day Enalapril – no more waking him during naps, no more packing his meds to run to the store – YAY! So now it’s just Enalapril (which lowers his blood pressure so his heart doesn’t need to work as hard) and baby aspirin.
We’re on track for Sammy’s cath sometime in January, with a potential for an overnight stay at that point (if they do anything internal besides check pressures, etc – he mentioned coiling off some of the collateral veins if needed). And then – Fontan sometime May or June. It’ll be nice to have our summer to enjoy, instead of spending it worrying and with the surgery hanging over our heads.
I’ve emailed Dr. Brown a bit recently, and not to jinx anything, but he’s really helped to calm my nerves about the surgery. I’m not looking forward to handing Sammy over again, but I don’t feel the overwhelming dread that’s been hanging over me the past two months. I asked about figures and survival rates and risks – the risk of a stroke is minimal, but still present with any intervention. The survival rate we had been quoted prior for this surgery was about 95% – a great figure, but it loops around in my head as “1 in 20 won’t make it”. That’s too high for my comfort.
Yesterday, he clarified it for me – that rate also includes older patients (adults who are still considered patients at Children’s because they’ve been patients since they were children). Apparently, the mortality rate is higher for adult Fontans and Fontan revisions, and since that’s included in the 95%, the survival rate is much higher for children in Sammy’s condition -
(Which, btw, is “healthy” – he called him “healthy”!!!! No medical provider – let alone his cardiologist – has ever called him “healthy” without a disclaimer (for example – “I mean, healthy, all things considered”).
Anyway, he gave me a rate of “higher than 99%”. Higher than 99%! That’s absolutely fantastically wonderful! Again, not to jinx anything – knock on wood.
Sammy’s still measuring in on the small side – 21lbs at 19 months – but no one seemed overly concerned. He’s developing just as any other 19 month old should, and it’s no surprise that he burns so many calories the way he just goes, goes, goes.
In other heart news, it looks like Jack is set to go home TODAY. He just had heart surgery on FRIDAY to repair his ECD/AVSD – it’s Tuesday. That is just amazing. Go Jack!

Seriously – I could listen to Counting Crows’ “Anna Begins” probably fifty times over without tiring of it.
I know I can’t be the only one. Well, Jay can listen to it over and over as well, as is evidenced by the fact that we’ve listened to it probably five times in the last hour. But outside of us, I know we’re not the only ones. I’m not sure what makes it such a fantastic song – maybe because it’s so raw and honest and we’ve all been there? Dunno. Love it.
In other news, cardiology appointment in the morning – just a check-in, though last time he said we’d schedule the cath at this appointment. It feels way too early to me to schedule it now if his surgery isn’t until May or June, so we’ll see. Think good thoughts – I’m hoping that since Sammy now loves stickers that his EKG might be a little easier to tolerate – look! Cool stickers on your tummy!
Ha. Mama’s totally just fooling herself, isn’t she? Sigh.
(So my iPod just went from Anna Begins to the Wiggles, Hot Potato. All music tastes are clearly represented in this household.)
Anyway, good thoughts for tomorrow would be much appreciated. He’s got his 18-month check-up (a month late) and potentially his Synagis (RSV) shot at the pediatrician after, and Jay’s tackling that on his own while I take the seniors to see some democracy at its finest. Good times. Heh.

As if I didn’t feel crappy enough today as it is, Sammy just clocked me in the eye socket with one of his cars. So while Jay teaches him (yet again) not to throw things, I’m sitting here with a freezer bag of Steamfresh broccoli on my face.
This yucky flu-sinus-infection-upper-respiratory fun made its way (quickly, thank god) through Sammy and has found its way to Jay. Because two miserably fever-chilled and snot-filled adults and one wildly hyperactive child makes for a restful, recovery-filled afternoon. Not.
Not. That just seems so 14-year-old of me.
I’m missing the wedding of one of our girls from the center tonight. It makes me sad to think I won’t be there to see her say, “I do”. But Alisa’s there and Amber promises there will be video, and really – they don’t need me hacking up a lung during their sweet vows of everlasting love – though I probably could have sniffled a duet to “Here Comes the Bride.” (Though she married her adorable girlfriend, so who walks in to the song? Hmmmm.)
Okay, Sammy’s now reset the TV buttons and I think Jay has conked out slumped against the couch. Before chaos reigns, I should probably put the broccoli back in the freezer and redirect my son to something a little more toddler-friendly – and preferably pillow-light or tied down, lest I end up with two black eyes.

You’ll only understand this if you spend as much time analyzing The Backyardigans as we do:
Jay (while watching Cave Party): So I was thinking, after they invented the party, Tasha invented the Walk of Shame.
Me: That’s f*cked up. They’re cartoon characters!
And sadly, we have several of these “revelations” about The Backyardigans over the course of a day, many of which are just too wrong to actually write down. I think they need to get the new season of How I Met Your Mother started – and soon.

For a while now I’ve been collecting really random symptoms, most of which I’ve written off as anxiety. Chest pain? Check. Numbness in my face? Check. Trouble breathing? Check. Dizzy spells? We’re best friends these days. But then I discovered a rather large lump on the back of my neck, which sent me into a tizzy – I swear the neighborhood I grew up in is a non-Hodgkins lymphoma cancer cluster (I blame the Brookhaven National Lab) and lumps in the neck were everyone’s first sign. Thanks to Dr. Google and my already-present anxiety, I spent the past few days convinced I had cancer and that it had spread to my bones (lump on spine? Check!) and that was it – I was done for.
Okay, so maybe I wasn’t that neurotic. Alright, alright, I totally was. My mom jokes that her tombstone is going to read, “I told you I was sick!” Maybe the apple really doesn’t fall far from the tree.
A trip to the doctor helped to calm me down. Yes, all those are side-effects of anxiety and that’s likely all they are. But with a fever, bone-deep exhaustion and a rather disturbingly swollen lymph node, something sketchy is taking over my body. And when I do it up, I do it up right – the last few times I was really run-down I ended up with a) mono, b) shingles, c) a lung infection – yes, d) all of the above.
What 20-something gets shingles for crying out loud?
So I’ve been relegated to bedrest, fluids, echinacea and more rest. They drew more blood than I swear I had in me and the results should be in bright and early Monday morning. If the white blood cell count is elevated more than she’d like, yay for more bloodwork!
I’m bummed that I won’t be able to visit the Reillys and Jack post-surgery – I really wanted to give them love and hugs. And Sammy is producing more snot than I knew a toddler could be capable of – and he’s apparently well-versed in the fine art of getting it all over everything – so it looks like it’ll be just Jay making the trip down this weekend.
The upside to Sammy being sick? Benadryl. Maybe we’ll get a full night’s sleep for the first time in months.

As many of you know, our close friends’ son, Jack, was born in June with an endocardial cushion defect (also known as an atrioventricular septal defect, or AVSD).
His surgery is at 11am this morning. Please keep all of them – Jack, Susannah and Reilly, surgeon, doctors and nurses – in your thoughts and prayers. I know how much you guys rock with that. Thanks.

So in Ethics today, one of the students called me Mrs. L****.
I explained that I wasn’t a Mrs., but rather Ms..
Three students, all male, practically in unison: I thought you were married?
Me: I am. I kept my own name.
All of them, at once: But Miss! That’s UNETHICAL!
Clearly I need to do some more work.

I am the mom every doctor dreads. Seriously. I have no qualms about calling about the tiniest thing. I’ve called the step-down cardiac floor when I can’t get through to anyone else. If I’m uneasy or unsure, I don’t care if it’s a Saturday morning, I will hunt down the pediatrician on-call. In the end, my son is just another patient to them and I’m just another neurotic mom, but I’m his mom and his health is my responsibility. So what if they roll their eyes when I call?
For example, this is the subject of the email I sent Sammy’s cardiologist earlier today: Samson’s Fontan-terrified mom’s obnoxiously long list of questions. It was followed by 9 questions about the Fontan, Fontan take-downs, how Boston handles Fontans, what we could expect and so forth.
The past few days have sucked in a painfully scary way. There’s definitely a correlation between how much I read about other heart kids and how poorly I’m doing emotionally. A bunch of kids recently had their Fontans – and then had to have them reversed (taken down) because their bodies couldn’t handle the change in dynamics. The next step at that point is usually transplant – though they can attempt the Fontan again some time later, the heart is usually too weak. I’ve seen relatively healthy kids go in for their Fontan and then end up with a take-down and then there’s talk of needing a transplant. Do you have any idea how terrifying that concept is? How do you go in and hand over your relative healthy kid and then end up on the transplant list? How do you, as a mother, cope with the knowledge that that is a possibility for your child? How do you prepare for the months leading to that surgery?
Throw in that our insanely wildly active child has been hyperventilating and turning bluer than normal, and I’ve been on the edge. Thankfully, his cardiologist is so fantastic and quickly replied to my email, explaining that the out-of-breath wheezing and blue lips are 100% normal for this stage. He also kindly answered all 9 of my questions, helping to calm some of my fears. Hell, he even used the term, “uneventful Fontan”. It amazes me that they can consider an open-heart surgery “uneventful”!
All of that aside, I have to say, I’m proud of one of my questions: Is there a higher risk of a take-down with a lateral tunnel Fontan versus an extracardiac Fontan?
Seriously – does that not sound like I have a clue or what?

While having a conversation with a student who has a bit of a rough past but is trying to turn it around:
Me: Well, I trust each of you until you give me a reason not to.
Him: Really? You trust me? I bet you still wonder if I have a knife in my bag.
Me: Nope. You’ve never given me a reason not to trust you, so I will trust you until you do something otherwise.
Him (really skeptical): But how do you just trust someone? I don’t trust anyone.
The whole conversation just made me sad – glad that I could be someone who sees good in him – but still, just so sad. We went on to talk about how sometimes you just need to give people the benefit of the doubt, and I know he wishes more people would do that for him. It’s just tough to see a kid who made really, really (and I mean really) poor choices in the past try to make things right and hit resistance every step of the way. I wish more people would give him a chance to make things right, to make his life right, when it’s clear he’s trying so hard to do just that.