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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
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Fontan
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Glenn
Life with Sammy
Norwood
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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 May 23, 2008

NOTE: Unless there's something worthy of an entire post, the most recent updates will appear over the course of the day at the end of this post.

5 am. Eeeek.

I spent the night curled up next to Sammy in his bed. Good for the mama soul, but not so good for mama sleeping! Sammy, however, was just so worn out that he slept a good 4 hours or so before stirring enough to wake up. (There were also a couple of doses of morphine in there, I believe.) His nurse took out his Foley cath this morning, since he is peeing like a champ. Between the chest tubes and the pee, he's well over what they wanted him to drain (500mls, he's at 800mls!). This means that he's got relative freedom over how much he's allowed to drink - and we all know how he loooooooooooves his apple juice. Go Sammy! If the morning continues at this pace, he'll be allowed breakfast as well - probably closer to 9 or 10, after they've done rounds.

She was also going to take out his central line, but 1) I wasn't comfortable with them doing it when I'm Sammy's only support here right now and 2) his meds are going through that line, and she decided to wait to switch them to either his arterial or his atrial line. Though rumor has it that those lines will come out this morning as well, leaving 2 peripheral lines, pacing wires and his chest tubes! I know it sounds like a lot remaining, but getting the lines out is a huge step! He is on oxygen, but I asked her to bump it down this morning so we could see what sats he could hold on his own - he's at 84% on 1 liter. This is normal for the type of Fontan he had. Obviously, we want him to be able to hold that on his own, but he needs some time to work on healing and getting his lungs back into shape.

(There are two type of Fontans - extracardiac and lateral tunnel. Sammy had the lateral tunnel with a fenestration. After the extracardiac, kids' oxygen sats are often very close to 100%. The LT Fontans take a bit longer, and he should settle out in the high 80s to low 90s. Once they close his fenestration (a hole they created in the heart to help with the pressures post-surgery and will close by cath in 6 months to a year), he will also be in the high 90s.)

We've been having issues with Sammy's rhythm, which they say is completely normal post-Fontan. I'm on edge a bit (ok, a lot) about it, though, since we had problems after the Glenn and there was talk of a pacemaker. He's in what's called junctional rhythm (normal is a sinus rhythm). They say that once his heart's swelling goes down and recovers a bit from the impact of the surgery, it should right itself. He's being paced right now; the plan is to try him off the pacer and see what his heart does on its own. If he can hold a regular rhythm and his blood pressure is good, we could possibly go to the floor today! I'm not holding my breath, but it would be so nice, since once we're there and Sammy's settled, we can begin walking him around and taking him to the playroom.

I'm waiting for my dad to get here (he's an early bird!) so he can sit bedside with Sammy and I can rest on the parent bed in the back of Sammy's room. Otherwise, it was a rather mellow night. I can handle a few more of those!

Updates:

7:00am: Fluid restriction essentially BUHBYE! When she told me earlier that he was over what they wanted, I didn't realize that they wanted him at -500ml for the DAY. At 7am, he's already -900ml. He has drained a LOT from his chest tubes and he peed a massive diaper not too long ago. This means we can pretty much give him juice whenever he asks. Yay!

7:50am: Just ordered breakfast for him - a little bit of everything. Not sure what he'll want to eat, but excited that he CAN eat if he wants! Our nurse (who ROCKS) is looking for the "special chair" and once she finds it, he can finally get down, which he's been begging for, and sit in the chair and eat. And once the lines are out and she gets the okay to leave him off the pacer for a while, we might be able to take him around theCICU in the wagon. Chances are slim we'll go to the floor today (because of his rhythms), but there seems to be enough we can do to keep him entertained in the meantime.

9:00 am: They're going to pull the arterial and central lines in about 15 minutes, and then they'll take out one of the chest tubes shortly thereafter. Breakfast came, but now it looks like it'll be an hour or so before he can eat.

10:00 am: Two lines and a chest tube out. One more line to go (hopefully later today), and his chest tubes (2) will probably stay in for a few more days. (They're just about the last things to go before discharge.) He hasn't eaten yet, but there's a wagon with his name on it when he wakes up from the last round of Versed (for the line-pulling - he's not on much of anything but some pain meds now).

Previous entry :Extubated!
Next entry: Little Bump

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