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
So, we're sitting in the CICU right now. The cath didn't quite go as planned -
Sammy was going in for a cath on Friday to close a fenestration (hole) purposely created during his Fontan surgery last May. This is a fairly straightforward procedure - they go in through an artery or vein and snake a line into his heart. They then deploy a closure device to plug the hole. Since they created the hole with something akin to a hole puncher, it's a nice, neat circle, easily handled with the closure device. (Here's an explanation of it all: http://www.aboutkidshealth.ca/PrinterFriendly.aspx?articleID=10295&categoryID=)
However, when they went in to close the fenestration (which went textbook, btw), they discovered that his body had created a vein between his liver and his heart. This vein was drawing blood away from the Fontan circulation and allowing for much more mixing than should have been - which is why he's been SO blue. They think that the vein was there prior to the Fontan but was too small to see by echo, and that the new Fontan circulation allowed it to grow too large. Typically, these "collaterals" grow between the heart and the lungs, and this hepatic collateral is apparently really rather rare.
They attempted to close this hepatic collateral with a closure device just like the one they used for his fenestration; however, unlike the surgeon-created fenestration, the hepatic vein was created by his body and the outline wasn't so smooth. They chose the best size to use, and the concern was that there might still be some bloodflow through the gaps around the device. Otherwise, he came out of the cath with oxygen saturations (sats) in the 90s.
That night, his sats continued to drop - down into the high 60s. A morning xray showed that the device in his hepatic vein had dislodged and was now in his heart. Further testing showed that it had not only gotten into his heart, but had moved THROUGH his tricuspid valve and into his right ventricle. This was the point where they determined open-heart was necessary - they needed to get in there and retrieve the device and close the hepatic vein by sewing it off.
That was Saturday. Cardiac-wise, he's been doing well. Emotionally, he is very unhappy and I can't blame him.
You can follow updates on my twitter: http://www.twitter.com/erikarenee
Previous entry :Fenestration-closing cath
Next entry: Recovery
Our thoughts are with you all. Sammy's site is always so uplifting; even with all that you're going through right now you have such a positive energy. I'm sure that is part of the reason that Sammy is such an amazing boy. You'll likely notice an energy increase with the fenestration closed and the collateral removed. Our son was always going full bore but once he had his fenestration closed (at Sick Kids in Toronto, in April) he stepped it up another notch. Sammy is strong - he'll be OK, I believe that 100%. Will follow on twitter. Stay strong.
Posted by: Janet Jaynes at September 28, 2009 11:22 AMErika,
I am sooooo sorry things didn't go as smoothly as planned. Oh how I wish Samson's cath day had been as smooth as Grace's. I just took a look at twitter and what a Praise that he may be moving to the floor! That is one step closer to being home :) We just moved homes and have been without internet for 2 weeks. I was just able to log on today and got your message. Thank you so much for commenting on Grace's blog. I can't wait to sit down and read your blog. Samson and you guys will most definitely be in our prayers!
Furr Family
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This Hope for HLHS site belongs to Erika, Jason & Samson
Erika and Jay-
Posted by: amy fiorillo at September 28, 2009 7:57 AMWe can't stop thinking about you guys. I'm sure the unexpected surgery has been traumatic for all of you. All of our positive thoughts and prayers are with Sammy and the both of you right now. Hoping that you get to the floor soon and that being able to play will help bring out that smile that you are waiting for.
Many hugs,
Amy and Lou