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
Sammy has not been Sammy at all today. Really lethargic, in a lot of pain, not wanting much of anything to do with any of us. He threw up earlier, which was mostly bile as he hasn't had anything but apple juice since Tuesday night.
His oxygen saturations dropped a little too much for comfort not too long ago. They think it was a combination of shallow breathing from the pain, low hematocrit and now, a retention of fluid. (He went from -500ml to +400ml, so he's carrying a lot more than he was this morning.) They think his lungs are holding on to the water, and since it hurts him so much to breathe, they're not getting the "exercise" they need to get the fluid off. And since his hematocrit is low, he doesn't have the red blood cells to carry the oxygen he is getting. (He dropped into the low 70s, and that's on oxygen.)
They gave him some morphine to help with the pain, and they're going to be giving him Diurel (a diuretic) to get some of the fluid off. They're also going to give him some blood products to help with the low hematocrit. The last line will stay in a while now, too.
So yeah - that prayer/crazy mojo/positive energy you guys work? Sammy could use some if you've still got it in you after working it so much the past few days. :-)
Previous entry :Fontan Post-Op, Day 2
Next entry: Bump #2 - Pneumothorax
Bless your hearts, I will send out many prayer requests.
Jen Wright
You've all been in my thoughts & prayers and I will continue to do so! Hold on to the hope-line, mama...Sammy is a fighter!
Posted by: Brenda at May 23, 2008 6:27 PMsending loads of positive energy your way. we will be watching for updates...best wishes.
Posted by: Michael, Patty and Sophia at May 23, 2008 6:31 PMI'm sorry you're having a rough day. You are all constantly in my thoughts. This is just what you said though - a little bump in the road. Sammy will heal and you'll get on with life and some day this really will be a distant memory. Keep loving your little guy - it really is some of the best medicine.
Posted by: civrchk at May 23, 2008 6:39 PMThis sounds alot like what Owen went through when he had his Fontan in February. On his 2nd day post-op he was so cranky he kept telling his Daddy to go home and the few bites he would eat came back up again! It does get better, try to hang in there...
Posted by: Janet Jaynes at May 23, 2008 6:49 PMOh, I'm sorry to hear Sammy is having a rough day (and thus his family). Many positive thoughts and prayers your way from Wisconsin.
Posted by: Sarah at May 23, 2008 7:32 PMStill here. Still checking in on all the updates. And of course - Still sending you positive energy. (and virtual hugs and kisses to the little man)
Posted by: Jennifer at May 23, 2008 8:13 PMPrayers being sent.
Suggestions to get him blowing / breathing deeper: Bubbles and pinwheels.
Sounds typical to where Olivia was at this point. My prayers are with you and I hope he turns this thing around asap :)
Posted by: Tricia at May 23, 2008 8:14 PMYou got it - all the positive thoughts and vibes we have. Hang in there Sammy, you'll be feeling like your self again in no time!
Posted by: Stefani at May 23, 2008 8:52 PMHave been praying for your family strength and his healing.....
sent the prayer request out to friends at church, in IL, in IA, and around town! plus all of that positive energy, prayer and wishes from your friends and relatives all over the world...that is one special little boy! very connected to all that's good and strong in this universe!
Prayers and positive thoughts will keep coming your way,strong as ever. I am so sorry that he is having a rough time today. :(
Take care of yourselves!
Amy
Hi. I found your website while searching for HLHS over the past few weeks. I have a little boy who is just one month younger than Sammy and I am 25 weeks pregnant with a little girl who we recently found out has HLHS. I just wanted to say I am praying for Sammy, I cannot imagine how hard this is on you. Your website is wonderful and I will check in on Sammy's progress and keep you in my prayers!
Krista
Sending buckets full of positive and healthy thoughts Sammy's way tonight. Your entries are so amazing and helping pave the way for us heart mommies who have the Glenn and Fontan ahead of us. You're all in our prayers tonight.
Sabrina
Sending buckets full of positive and healthy thoughts Sammy's way tonight. Your entries are so amazing and helping pave the way for us heart mommies who have the Glenn and Fontan ahead of us. You're all in our prayers tonight.
Sabrina
Bumps in the road are just that...bumps that you have to get over. Sammy is super strong and so are his parents - thoughts and prayers continue to be with you!!
Molly
Keeping you all in our thoughts and prayers and will add a few extra.
Posted by: Kim at May 24, 2008 12:03 AMI remember from one of the other Fontan kids that this happened and they brought in bubbles to make them take the deep breaths.... not sure if that is helpful at all... just an idea?!? If you want us to wait to visit we can come up on Monday instead. Just email me in the a.m. I'll shoot you an email if I don't hear from you. xoxoxo
Alicen, Chris & Ellie
I'm sending all of my best thoughts to you, Jay, and your little guy. Again, thank you for keeping us on the up-and-up.
Posted by: Krista at May 24, 2008 12:35 AMStill thinking of you and praying for you all. I know this is so tough. I remember those hospital days (It's not like it was that long ago). Just know that there are so many people pulling for you guys and who love you!
Shari (Mommy to 3 boys, including the amazing little Marcus, HLHS)
Posted by: Shari at May 24, 2008 2:10 AMStill praying hard!! Hang in there, guys.
Posted by: Megan at May 24, 2008 8:06 AMTwo steps forward, one step back. Seems to be the norm in the CICU, although it does stink.
Sammy is a tough little guy and I hope he gets over this bump fast. Give him some kisses from Abby! We're thinking of you and praying like crazy!
-Alison (Abby's Mom)
Posted by: Alison (Abby's mom) at May 24, 2008 8:41 AMwe're thinking and praying for you guys & little sammy! :) thanks for keeping this so well updated. you guys have been on our minds so much!
Posted by: Bethany at May 24, 2008 8:47 AMSending lots of special thoughts to Sammy and his mommy and daddy today.
Love, Daric's Family
Posted by: Daric's Family at May 24, 2008 9:23 AM(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
Sending love and prayers your way, Sammy and family.
Posted by: Deb at May 23, 2008 6:11 PM