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Pictures from Stage 1, the Norwood
Pictures from Stage 2, the Glenn
Pictures from Stage 3, the Fontan Please note - these pictures, for the most part, are "safe". If you're interested in post-op pictures from the Norwood, please email us at us@babysamson.com for access.

Coping
Doctor Visits
Fontan
General Updates
Glenn
Life with Sammy
Norwood
Other HLHS families
Support
Surgery & Recovery
Surprises
Test Results
Worrying

Amazing little boy
Four years old
Happy holidays!
Home, home, home!
Recovery
Unexpected Open Heart Surgery
Fenestration-closing cath
One year post-Fontan!
NSTAR's Walk for Children's Hospital Boston
3 years old & cardiology visit
Wild Man
Update and Santa
Blue episodes and a cardiology appointment today
Ellie's Fontan
Post-Fontan Cardiology Visit
"You've gotta just let him be."
Sammy's Recovery from the Fontan
Life Post-Fontan
Bump from home
We are home!
Fontanized - Day 6 Update
Day 4 Post-Op 2:30pm Update
Fontanized, Day 4 Post-Op
Bump #2 - Pneumothorax
Little Bump
Fontan Post-Op, Day 2
Extubated!
Fontan Post-Op Update
Fontan Day
Fontan Pre-op Done
Checking in
Update, 2 years old, Fontan date, more
And we're free!
Pre-Fontan cath DONE.
Cath Day
Day 1, Pre-Fontan Cath Prep
Pre-Fontan cath
Twenty-three months: chatterbox, the holidays and the cath
Twenty-two months
Cardiology visit
Eighteen months
Seventeen months
Early Intervention Assessment
Fourteen month update
Miles for Miracles - Together in Heart.
Sedated echo
Look who's one!
One year.
11 1/2 months old!
Almost 10 months old!
Cardiologist Visit
Just about nine months!
Who is this kid, and what did you do with my baby?
Eight months old!
7 months old!
Coming up on 7 months
Six month update
Post-op Checkup & Life post-Glenn
And we're outta here!
Waiting to go home & a few firsts...
Truckin' along
Step-Down!
And the lines are OUT!
Happy updates
Post-Glenn, Day 4
Post-Glenn, Day 3
Post-Glenn, Post-Bronchial Spams, Day 3
Not fun - post-Glenn, night 2
Post-Glenn, Day 2
Post-Glenn, Day 2 - morning
Post-Glenn, Day 1, part 2
Post-Glenn, Day 1
He's out!
In surgery - updates
the wait
The night before the Glenn
Preparing for the Glenn
Update & Surgery
Milk Allergy Fun
Chatty Sammy
Cath Hospitalization
Catheterization
Gasmonster!
Teaching Sammy about the world.
Miles for Miracles
First bath!
Gassy infant prodigy
Rockin' Sammy
Revelations about mamahood
Babymoon, Part 2
Babymoon, Part 1
Home Sweet Home
Discharged!
Rumor has it...
Stepdown, Day 2
We have step down!
Today was pretty mellow
No step-down for you
Time to buy stock in St. Joseph's
One step closer
Extubation!
One step at a time
Done with the closing
Chest Closing
Birth story
Chest Closing & Mama in Triage
Recovery
Out of Surgery
Welcome, Sammy!
Samson Arrives
Labor update
Of due dates and inductions
Baby Grace
Snow baby?
Welcome to the jungle
Getting closer...
37 1/2 week update
Fighting the bad thoughts
Getting bigger - and closer!
31 weeks with Dr. Brown, CHB
31 Week Appt. w/ Dr. Johnson
One big monkey!
Starting to Get Ready
30 Weeks and Full-blown Panic
Silly Pregnant Lady
27 Week Visit
Fears
EFO Shout Out
Weird Pains & an Early Morning Trip to the Hospital
Fetal Echo at Boston Children's Hospital
DiGeorge's - Negative!
Evil Genetics Counselor
Full amnio results
22 weeks and Life Now
Pediatric Cardiologist
Redefining Normal
FISH Results
Embarrassing the poor boy already
The Baby's Name
Post-Amnio
Pre-amnio, Baby痴 name riddle
Reiki energy, and not being alone
Friends and Tarzan
Trying to get through the day
The diagnosis
Trying to stay positive
Pre-Diagnosis

posted by Mom on September 26, 2007

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, and I never understood it because Sammy always looked pink to us. It'll be bizarre post-Fontan to not have those darkish lips - 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!

Previous entry :Eighteen months
Next entry: Twenty-two months

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PLEASE contact us if you want to talk. Having others who have been through this there for us (even when we just needed to freak out!) has been so, so instrumental in coming to terms with what's we're up against.

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