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 today didn't go quite as planned.
Something happened this morning - Sammy had an arrhythmia, and it concerned the staff. They weren't sure if it was a reaction to the morphine, if he had gotten too riled up through the sedation or what... but toss in that his blood pressure was ridiculously high for a good while and the fact that he was still retaining too much fluid, and it was a bit of a rough time. I'm still on edge and haven't been able to come down from it.
He's still a bit sedated, still asleep most of the time - waking only a few minutes at a time, uncomfortable and quite out of it. They upped the diuretics and he's been peeing like a champ. He looks much more like himself. We're hearing that he's had a good turnaround - 180° from this morning! Our surgeon just assured me that he looks good. That makes me feel a bit better.
One concern we're having - his heart rate is really low. He's always been on the low side - he should be up around 100, at least, and resting now, he's dropping into the low 60s, high 50s. (At home he would hover in the 70s when he was asleep, and it never quite sat right with me.) They had pacemaker wires in, as a normal post-surgery precaution, so they hooked him up and they're keeping him at 100. (It was wild watching his heart rate on the monitor adjust to whatever the doctor twisted the little knob to. Want 85? Here you go! Very, very weird.) The surgeon said he didn't think we'd need to do a pacemaker long-term (knock on wood), but that he wanted the heart rate specialists to come by anyway and do some tests.
Anyway, he's still got his drainage tubes in, obviously the pacemaker wires - but the good thing is that he's off the oxygen and holding 80s on his own. (Remember - most of us have oxygen saturations at or about 100. He was dipping into the mid-high 60s pre-Glenn.) His blood pressure is coming down and when he does wake up, his eyes aren't as glassy. They last gave him a touch of morphine around 4pm when they took out his central (jugular) line, so he's on Tylenol for pain. He's taken a little bit by bottle, but we're still waiting for him to wake up to really start to eat. We were told 1-2 nights in the CICU, but I think we're looking at 3.
I'm exhausted. It's a different exhausted than I was waiting for the surgery. This is a bit more of a rollercoaster - I want everything to automatically be okay post-op, and that's not how things work. There are little kinks and concerns, and I walk around on edge using all that energy watching his numbers and asking the doctors and nurses all sorts of questions, just so I know he's okay. I think I'll be better when he's awake and a little more himself.
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This Hope for HLHS site belongs to Erika, Jason & Samson
Hang in there! He will soon be awake just to see you. Keeping all of you in my prayers
Posted by: Shamira at July 20, 2006 11:32 PM