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.
Doctor Visits
Fontan
General Updates
Glenn
Life with Sammy
Norwood
Other HLHS families
Support
Surgery & Recovery
Surprises
Test Results
Worrying
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
Hi all,
Sammy has a heart cath to close his fenestration next Friday, September 25th. He will go in on Thursday for pre-op - bloodwork, EKG, xray, etc, and then they'll let us know when to bring him in Friday. They plan on keeping him overnight Friday night for observation, and if all goes right, he should be discharged Saturday morning.
When Sammy had his lateral tunnel Fontan last May, the surgeon created a hole, or "fenestration". This was to help his system adjust to the new circulation and pressures created by the Fontan and is a very routine choice for Children's Hospital Boston. In some children, the fenestration will close on its own, but in most it needs to be closed with medical intervention.
Currently, the fenestration allows for considerable mixing of his oxygenated and non-oxygenated (red & blue) blood. His oxygen saturations (sats) hover in the 60s and have for quite some time. As it hasn't slowed him down much, it wasn't a great rush to close the fenestration. But as he grows, he does seem to get out of breath quicker and man, the kid can turn blue! (Purple fingers and toes, lips that look like he's been eating a blue raspberry lollipop and just a general bluish tone to his skin.) So the hope is that by closing the fenestration, the blood can't mix anymore and his sats will go up into the high 80s and (we would LOVE to see) the 90s. This means that more oxygen will be getting to his organs and the rest of his body - most kids after this point are PINK. We've only ever seen a fairly pink Sammy while he was on oxygen in the hospital. He should have more energy after this as well. (More??!?! I asked his cardiologist if this procedure also gives mom and dad more energy as well - we can hardly keep up with him right now!)
There's a diagram of a fenestrated fontan here; Sammy's anatomy isn't exactly the standard HLHS, but it gives the general picture.
Please keep the usual suspects in your thoughts and prayers next week - Sammy, the doctors, nurses, Daddy, Mama. Thanks!
Previous entry :One year post-Fontan!
Next entry: Unexpected Open Heart Surgery
Praying for you guys today and tomorrow! Following your updates closely on twitter.
Megan
Posted by: Megan at September 24, 2009 2:15 PMi visited this site two years ago and i wished him well like everybody else. I am glad that he is well. you are one lucky boy so are your parents sami.
Posted by: simon at September 24, 2009 3:31 PM(If you haven't left a comment here before, you may need to be approved by the site owner before your comment will appear. Until then, it won't appear on the entry. Thanks for waiting.)
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This Hope for HLHS site belongs to Erika, Jason & Samson
Thinking of you and Sammy. Will pray for him that all will go well.
Jennifer
Posted by: Jennifer at September 20, 2009 1:02 AM