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
Sorry we went so long between updates - know that no gnews is good gnews!
The past day and a half on the floor has been good. We got clearance yesterday to take him "anywhere you have permission to go on the hospital grounds" - so, the caf, the courtyard, the fishtank, etc. He was very happy to get out and about - we even brought his little car from the hotel and he can "drive" around the hospital in it. He started walking again yesterday - first stopping often to ask to be picked up (which is very awkward, since we can't lift him under the arms), but now making it down to the playroom on his own. Last night, he sat up around midnight and told me he was hungry and wanted "jello bread". I could only imagine this was exactly as it sounded and made up some orange jello on white bread for him. He chowed down on it! It's so nice to see his bizarro eating habits are starting to make their way back. :-) This morning we threw a blanket on the floor of his room and had a picnic - not that he ate much - but he played and played and played, his harmonica, some Play-Doh, his saxamaphone and a few other toys. He smiled and even laughed a bit. Of course, the laughter followed throwing Play-Doh balls around the hospital room, but it was still so good to see and hear.
That said, Sammy is becoming increasingly resistant and upset when someone walks in the door because he knows it involves meds or needles or the blood pressure cuff or something else that he just does not want. He's very tired of being poked and prodded, and it's coming through at night, when he'll start crying and saying things like, "No - I don't want to!" in his sleep. It's hard to watch.
We had a little bump with very low potassium levels(not uncommon with the diuretics he's on), but after giving him some over three hours the other night, his levels were back up in the normal range. His lungs have stayed clear for a few days now, and everyone who listens to his chest is thrilled at how good he sounds. His sats are still low (low 70s - low 80s), but we're told they should increase over the next month, and then do a bigger jump when they close his fenestration by cath. If they don't increase slowly on their own, they might opt to close his fenestration sooner than later. However, we should see more stamina from him, even with the low sats, as his circulation is much stronger now. This is wonderful to hear, since the blue episodes were coming more frequently and were just not fun - for him, or for us to watch.
The plan for today includes bloodwork (done), xray, EKG (after which they should pull his pacing wires), bandage removal and an echo. If Dr. Brown gets the pictures he wants and everything looks good (no fluid around heart/lungs, no real swelling, heart function is good, etc etc), then we could be (KNOCK ON WOOD RIGHT NOW, DO YOU HEAR ME? :-)) on our way home tomorrow, one week post-op.
We'll update when we can - but right now most of our time involves entertaining and keeping happy one amazing little boy.
Previous entry :Day 4 Post-Op 2:30pm Update
Next entry: We are home!
This is all such wonderful news to hear! I'll be praying for a trip home in your near future. I hope Sammy continues to progress in his recovery, and that soon all the needles and meds will stop and he can just play and play and play!
Love and hugs and good thoughts to all!
Kristy from Georgia
Now THAT's how we recover from a Fontan!
Fingers, toes and eyes crossed that you get to go home TOMORROW! TOMORROW!
So amazingly happy for you all :)
Posted by: Tricia at May 27, 2008 11:26 AMI am almost teary reading the wonderful news. I'm so happy for all of you, that you can have some relief and play time and normalcy. I'm hoping you can get home very soon for even more normalcy!
Sammy is awesome! What a star. xoxoxo
p.s. Mmmmmmmm, jello bread!
Posted by: Megan at May 27, 2008 11:31 AMWhat wonderful news! I'm so glad to hear that Sammy is doing so well and that you guys will be on your way home soon :)
Posted by: Jen Wright at May 27, 2008 11:32 AMFantastic news!! Thank you for the updates for those of us that are turning blue from holding are breathe hoping everything is ok. ;) So happy things are going well (and knocking on every piece of wood I can find that it continues this way)
Posted by: Jennifer at May 27, 2008 11:37 AMWoo hoo!!!! This is all great news - and I knocked on wood extra hard for y'all. Keep us posted - Go Sammy!!
Molly
Crossing everything I can possibly cross!
Way to go Sammy!!
Posted by: Susan at May 27, 2008 11:56 AMSounds wonderful!!!
Posted by: Allie at May 27, 2008 12:10 PMKnocking on wood and sending all of the best thoughts I can toward you guys!!!
Posted by: Krista at May 27, 2008 12:52 PMCouldn't be any better news! Sounds like Sammy is on his way!
Posted by: Amy at May 27, 2008 1:28 PMWoohoo! Glad to hear the good news.
Posted by: Sarah at May 27, 2008 1:32 PMStill have everything crossed for happy Sammy & family homecoming ASAP. I'm starting to get funny looks with my eyes crossed, but I figure it's worth it ;-)
I've been keeping up on your updates..THANK YOU SO MUCH for keeping us updated! I'm so glad to hear that the recovery is going great!! Looking for more good news soon!
Posted by: Caroline Conroy at May 27, 2008 5:48 PMJello Bread eh!! Kinda weird, but who cares He ate it!!!!
Can't blame him for not liking all the doctors and nurses around him, Hopefully he gets over it quickly.
Hope you get a great echo, and get home ( KNOCK ON WOOD!!!) WOW!! can't believe it is only 1 week..
lots of luv
Drea & family
This is so good to hear. I've been checking up on you guys a few times a day and it's wonderful to hear all this good news. You have one, amazing little boy. :)
Posted by: Kathy at May 27, 2008 6:42 PMI'm so glad that he's doing better. I can't even imagine how heartbreaking it was to watch him. Both of us were just sitting here like, man, that poor kid. I hope he gets to go home!
Posted by: statia at May 27, 2008 10:50 PMWow, your little Sammy rocks! Fantastic news, can't wait to get the H-O-M-E report! I love that he wanted jello bread and that you figured out how to make it for him. Sending you Heart Hugs from far away!
Posted by: Andrea at May 28, 2008 6:16 AMYeah sammy! *i crossed my fingers while i knocked on wood! haha:) i'll be checking back all day like i've done all week haha... ((((sammy)))) thats a hug because today is hug a musician day and hes my favorite musician!
Posted by: kerry at May 28, 2008 10:46 AMSOOO glad he's doing well!!! I hope you're on your way home right now!!
Posted by: jesser at May 28, 2008 12:10 PMI'm gonna have to try that jello bread. LOL. Where did you find the button down jammies? I have searched too. Hope you all are doing good...waiting for today's post.
Jacquelyn Thole
Posted by: Jacquelyn S Thole at May 28, 2008 1:33 PMErika,
I just read on your twitter that you are at home! That is awesome. Sammy has been an inspiration for us and we have been clinging to the good news lately as we are awaiting the arrival of Emma Kate. Thank you for your updates!
This is wonderful new! I just read on your twitter that you are home. I'm so happy for you guys.
Posted by: Brandy at May 28, 2008 9:31 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
Sounds like everything is moving in the right direction--towards home. It's just not the same around here without you!
Posted by: Deb at May 27, 2008 10:36 AM