"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
Doctor Visits
Fontan
General Updates
Glenn
Life with Sammy
Norwood
Other HLHS families
Support
Surgery & Recovery
Surprises
Test Results
Worrying
Yesterday: We're here. We were admitted around 1 this afternoon. They did an xray and an EKG, throughout which Sammy screamed his head off. He finally calmed down when we got up to the floor, but he's been off all afternoon. Can't blame the poor kid - we're in a hospital. All the sounds and smells can't bring back good memories, I'm sure. He finally fell asleep on my chest for a while, all decked out in his Red Sox gear with his team kicking Yankee butt, 4-1.
We're doing okay. Oddly, I'm comforted being here. At home, I'm always on edge - what does this cry mean? Is his heart beating right? Here, on monitors, the control freak in me feels safe. And here, should something happen, I know he's in the best hands and those hands are just a short yell away. When we were here after he was born, after his first surgery, I almost didn't want to go home. We're taken care of here. He's taken care of here.
On a happy note, Sammy broke the 11 pound mark and now weighs a chunky 11lb 2oz and is 24 inches long. That's almost a FIVE POUND gain since we came home two months ago. This is fantastic for a heart baby!
Knock on wood.
Today around 11: They took Sammy into the cath lab this morning around 7:30. We didn't sleep much last night, but Sammy ate like a champ yesterday, sucking down almost four ounces more than he normally does - and he slept like a, well, baby. Jay sat with him this morning until he had to go in for anesthesia -- he wasn't the happiest camper considering that he hadn't been allowed to eat for the past 4 hours.
We got an update about 40 mins ago saying that he's doing really well. They have him under sedation but he's breathing on his own and not on the respirator. They've gained access to his heart and are running some hemodynamics tests before starting with the pictures and balloon dilation.
Today at 12:30: They called us to let us know Sammy was all done. We're sitting with him for a while in the cath lab while he comes out of the anesthesia. He's groggy and unhappy about being sedated, and he keeps fighting against it. His cries are kind of funny - they're normal cries sort of dragged out over a longer, medicated time. He hates the IV board on his hand and kept whacking himself in the face, so he's swaddled all snug while they monitor his heartrate, oxygen sats and respirations.
Apparently, they had to do the ballooning a couple of times - they weren't happy with the first few attempts. From what we know right now, everything went okay - I guess we'll see what the next few weeks bring. If the stretching didn't go as hoped, it's something they might need to work on during his next surgery (the Glenn) in July.
They're going to keep him for observation, and as along as he's doing well, we should be discharged tomorrow.
Thanks for keeping us in your thoughts.
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This Hope for HLHS site belongs to Erika, Jason & Samson
Just checking in to see that all is well ...????
Posted by: Tricia at June 2, 2006 2:30 PM