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
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
NOTE: Most recent updates will show up at the bottom of this post.
Morning everyone.
Jay just called me to fill me in. Sammy is doing well. I'll back up to yesterday afternoon, since we kind of went radio silence after our update that he was out of surgery.
I'll start with this: he is doing VERY well. Knock on wood, say a prayer, thank whomever, but he's doing really well.
We were able to see him around 3:30. I thought I was prepared for it, having been through it twice already, but now that he's a walking, talking little person - I had a VERY hard time dealing with him in his post-op state. I know what each med and each wire looks like, but there he was, swollen and sedated and covered in things. It was really hard for all of us. Thankfully, Jay is amazing in these situations and was able to stay with him last night, and my Dad made his way over really early this morning. I just couldn't. I know he's okay - they kept telling us yesterday that Sammy was doing everything a kid is supposed to do post-Fontan, but the difference? It was MY kid whose blood pressure was rollercoastering, who had to be paced because he was having really bad rhythms, who was trying to open his eyes with all this terrifying stuff all over him, MY kid. His core temp was higher than they wanted, so they put a cooling blanket on him. He was freezing to the touch, but it sounds like it did the job as Jay says they've taken it off. Every so often, Sammy would stir and try to look at us and my heart would just break. They ended up putting him on a paralytic and some more morphine/versed to knock him out until they're ready for him to wake.
This part is by far the hardest part for all of us, I think.
There's talk of extubating him later this morning (taking him off the ventilator). They're slowly weaning him off the paralytic (cisatracurium), and they stopped his morphine and versed around 3. My dad just called to tell me that he's almost off ALL his medicines (dopamine, milrinone and nipride) and that he's opening his eyes for 10-20 seconds at a time.
I'm hoping I'll be able to handle this as these things take place, but I came back to the hotel to sleep last night because I just couldn't be there and see him like that. As it is, I'm having a hard time bringing myself to go back this morning. I'm waiting for the other shoe to drop.
We'll update as we have some major milestones, but for now, the summary: he's off all the meds. I gather he still has his lines in (central and arterial) and he's still intubated. The nurse said that they could extubate him as early as 10 but it's not a guarantee.
(I haven't posted pictures because I didn't want to catch anyone by surprise - they're not easy to see. My mom has one posted here. It's just Sammy's face, but he is intubated and with a few other things on him. As he starts waking, I might start posting, but until then, we're keeping pictures off until we can protect them/warn people first.)
Updates:
6:45am: Sammy was given a small dose of morphine to help him calm down, and is watching Peep and the Big Wide World and the Wiggles.
9:00am: Sammy's resting well. They've turned his ventilator down even more -- still tracking towards a noontime extubation. Rounds have begun and once they make their way here we'll have a better plan for the day.
11:00am: Sammy has developed quite a tolerance for morphine and versed. They are switching him to another sedative, Dexmedetomidine, with the hope that he can get some good rest for the next 4 hours. During that time they will introduce a second diuretic. Hopefully he will be extubated around 4-4:30. It has been a very long day already, but he's still heading in the right direction and all of the doctors are very pleased with his progress.
Previous entry :Fontan Day
Next entry: Extubated!
Sammy is a trooper. I'm giving you Erika a BIG GIANT HUG!!!! Always prayers fro all of you.
Posted by: Stacy at May 22, 2008 7:13 AMSammy is a trooper. I'm giving you Erika a BIG GIANT HUG!!!! Always prayers for all of you.
Posted by: Stacy at May 22, 2008 7:14 AMGood morning.
This is all normal. Your reaction. His status.
I've been thinking about you day and night, night and day. Call if you need anything - I'm here for you.
Posted by: Tricia at May 22, 2008 7:20 AMGood morning! Almost off all his meds. That is crazy!! So happy to hear that everything is going as it should. I had trouble sleeping last night! Sammy is SO a rock star. Chris and I hope to see you guys Saturday morning. Love you all xoxoxo
Alicen
Hugs~~
You can do it Sammy. You are such a strong little man.
D
Oh that little guy with all his tubes breaks my heart. He is beautiful ... what a trooper! I will be thinking of you today.
Posted by: jesser at May 22, 2008 9:12 AMIt sounds like he is doing just great! Those are all things that Elijah's body went through post-op, too (the high temp, the rhythm issues), and they will even themselves out. These things are very normal. It's very promising news that they are already talking extubation! Wow, what a champ! Still sending you many prayers..
Posted by: Megan at May 22, 2008 9:14 AMhang in there...Sammy seems to be making a really good progress. And the post-op picture looks better than I would have expected. We will be hoping for continued positive updates. We are sending everyone hugs and our best wishes for a rapid recovery.
Posted by: Michael, Patty and Sophia at May 22, 2008 9:27 AMI can't begin to imagine what you are going through. Hang in there--Sammy is doing great, and it is almost over.
Hugs.
Posted by: Susan at May 22, 2008 9:39 AMHugs to you and hugs to Sammy. And hugs to Jay for being such a good supportive husband and father. And hugs to your family for being there too. Just hugs all around. I'm sure it's hard, so hard I can't even imagine, but I'm so very happy for all of you right now I'm actually crying because I was so worried for Sammy. He's a trooper and you're a trooper and Jay's a trooper and I'm so glad Sammy's done with the surgery and seems to be doing well.
HUGS AGAIN!
-t
Aw sweetie I'm thinking of you guys today.
Posted by: erica at May 22, 2008 10:04 AMGlad to hear he's hanging in there. You hang in there too, mama. Still sending all our thoughts to you guys!
Posted by: Stefani at May 22, 2008 10:21 AMThought about you guys all night and what I could do to help, and lacking any answer to that started posting more linkups to here & the Sammy pre-op pics/vid to loop people in.
BTW, I apologize for linking the post-op pic in my comment for yesterday; I should have known they were intentionally not showing up on your stream. I thought Sammy looked incredible, given the circumstances, and found the pic reassuring -- but I know if it were my Sara there, or Sara were slated to undergo the same op, I would see the image a little differently.
(And all this time I thought that was your sister's Flickr account; I'm a silly rabbit!)
That poor little boy!! And poor mama! I can't imagine how hard this is for you guys. Just keep focusing on the positive. (I know you are). I saw a sign the other day "Obstacles are those nasty things you trip over when you stop focusing on your goal" - Just hold on to that mental picture of him home in your mind. Soon enough it will be here. A steady stream of positive vibes are still in your direction!
Posted by: Jennifer at May 22, 2008 11:03 AMWe are thinking of / praying for all of you! He's such an amazing, strong little boy!
Posted by: robyn at May 22, 2008 11:14 AMThinking of you all today...keep us posted.
Posted by: Allie at May 22, 2008 11:23 AMI have been thinking about Samson and your family all evening yesterday and all today. I will continue to pray for his recovery, and for your strength. Hang in there!
-Kristy in Georgia
I know you are so exhausted - hang in there! Sounds like Sammy is the little champion...thoughts are with you and the family. You're getting there!
Molly
I've had you all on my mind. Hang tough Sammy, you're doing great! You too Mom and Dad!
Posted by: Kathy at May 22, 2008 3:48 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
I'm glad that Sammy is doing so well, but I can't imagine how hard it must be for you to see him post-op. I completely understand how rough that must be. Can't wait to see Sammy home and running around and jumping in puddles again!
Posted by: Deb at May 22, 2008 7:09 AM