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
NOTE: Most recent updates will appear at the bottom of this page, unless there is something that warrants its own post.
As of 8am - here's what's going on:
- Sammy still hasn't eaten, but he has thrown up several times. They've given him Reglan and Zofran and some Zantac to help with it. This morning's theory is that he wasn't having the cardiac output he needed to get his stomach moving, so they began pacing him again. The good thing is that they usually see an increase in drainage when they pace, and Sammy's output stayed about the same. He's near (or in) the range that's acceptable for reabsorption, so his drainage tubes might not be necessary for much longer.
- However, even if he does get hungry, he can't eat for at least a few more hours because they discovered a pneumothorax after doing an xray this morning. This is an air pocket in the lining of the lung, and it means Sammy will need to have another chest tube placed to get the air out. We're hoping that it will be done as soon as his 4 hour no-food-water limit is hit - around 11. (My happy thought is that they will take the drainage tubes out when they put this one in, but not getting my hopes up.) They will sedate him a bit and give him local anesthesia when placing it. Do I need to tell you how unhappy mama is about having to put him through something else? I know it's necessary, but really - my poor little boy.
- The hope is that once the pneumothorax is taken care of, he'll be able to expand his lungs better and that his sats will go up again.
- He's still in junctional rhythm, though I believe they're seeing more sinus beats in there.
- He still has the line in his neck. When I left last night, his nurse had talked of taking it out once she drew labs this morning. Now? Still in. And of all the lines, I hate this one the most.
My concerns, really, lie with Sammy's comfort. These are bumps - annoying bumps, but from my understanding, not bumps that cause a serious concern about his heart. They're not uncommon. But still - they are things that are potentially keeping us from getting to the floor, and while I know we don't want to be there any sooner than Sammy's body is ready for it, he is getting very tired of being in the bed and often asks to get down, to go somewhere else. When we're on the floor, we can take him to the playroom for a change of scenery and get him moving a little bit, maybe get his spirits up a little bit. But each of these bumps potentially keeps us in the CICU even longer, and since I was told the average post-op CICU stay is 1-2 days and we're on day 3 with day 4 looking pretty likely...
Ugh.
Updates:
2:30pm: Sorry we've been lax on the updates. Aside from getting the chest tube put in (a "pigtail") and the line in his neck out, it's been pretty quiet. They did an xray after and it looks like the pneumothorax is gone. WOO HOO! He's still really uncomfortable, as one would expect, but wakes every so often and is starting to talk more. He downed a juice box and 5 ounces of milk and has kept it down so far, but no solids. Still, he's getting calories in him finally. Both drainage tubes are in, though his drainage has slowed considerably. His sats are in the low 80s, even after dropping him from 3 liters of O2 to 1 liter. Yay!
He's still on the pacer, but now it's just maintenance. They've got it down to 70 and he's hanging right about 100 on his own (so it'll kick in if he drops, but otherwise it's just hanging out). Even better? He's back in sinus rhythm! Woo hoo!
We're in the CICU at least for tonight (our nurse said there's been no talk whatsoever of the floor for him - I plan on bringing it up to the doctors at rounds and put the bug in their ear about pleasepleaseplease maybe possibly moving us tomorrow). His draining has slowed so much and he's pacing on his own - the two things really keeping us from the floor. Otherwise, Sammy's sleeping a lot - partially from the sedation from the new tube and partially because he's just wiped out. Quiet is good!
Previous entry :Little Bump
Next entry: Fontanized, Day 4 Post-Op
I am sorry for all the little setbacks...but it sounds like the docs and nurses (because we know the nurses really run the show once the healing part begins) are on top of things...I'm sure it's frustrating to be in CICU longer than normal-but best to be sure Sammy's body is truly ready to move to step-down first...
You guys have been on our minds constantly over the past week. We're always checking in for updates...
Posted by: Allie at May 24, 2008 10:35 AMI know you are scared right now... but trust that he will pull through! I hate the ups and downs of these surgeries!! You all are constantly in our thoughts/prayers... We have a team of prayer warriors here in Oklahoma for you all!!! Love you, call me if you need to!!!
Faith, Adam and Gavin
Posted by: faith kuykendall at May 24, 2008 11:01 AMAnnoying bumps in the road, that's for certain. So glad that Sammy has someone like you to advocate for him! Hope that the staff is treating you all well. Many prayers that Sammy will be transferred to the floor and able to play very, very soon!
Posted by: Brenda at May 24, 2008 11:20 AMSending all our love and hopes for the bumps to smooth out quickly.
Posted by: Susan at May 24, 2008 11:39 AMAwww, poor Sammy, and you too. Sending good thoughts your way for Sammy's pain to be under control and for those dumb tubes to be able to come out. Stay strong.
Millie and Colin
Bad Bump!! BAD!! GO AWAY BUMP! :( Hoping this bump gets smaller and smaller throughout today. Keep the updates coming. I'm here rooting for you all.
Posted by: Jennifer at May 24, 2008 11:44 AMI'm sorry for the bump in the road. Sammy is a champ, and I know you and Jay are so proud of how he is doing. I am keeping you all in prayer.
Posted by: Cindy at May 24, 2008 12:49 PMThese "annoying bumps" are annoying, I know. But, you'll get through it and be on the floor soon enough. And, before you know it, you'll be home! Yay, Sammy! Thinking of you and yours...
Posted by: Jennifer at May 24, 2008 12:54 PMUgh! So sorry to hear about the bumps in the road. It's not what any of us hope for, but probably what we should expect. I am totally with you on how it affects our kids. I am usually not so concerned about what needs to be done, because it does NEED to be done, but I hate that they have to be uncomfortable. And I hate the neck IV too. My thoughts and prayers are with you, from one mama in the hospital to another.
Posted by: Andrea at May 24, 2008 1:10 PMErika,
Sorry to hear about the complications. Post-Fontan is no fun but hopefully this will help him get on the right track. We were in the PICU for several days longer because Marcus had to be paced and honestly? It was nice. But Marcus wasn't wanting to go anywhere at that point.
Sending lots of love your way as always and always thinking about you and checking for updates.
Shari
Posted by: Shari at May 24, 2008 2:06 PMI found your site through Gavin Parker's site. My daughter, Grace, also has HLHS. She has had the first two surgeries and we are approaching her Fontan in about a year. My heart/thoughts/prayers truly go out to you. I am so sorry Sammy is facing these "bumps". Grace had many "bumps" along the way with her last surgery. However, God pulled her/us through each one! These kids are such fighters, they are so amazing! We will definitely keep you guys in our prayers!
Furr Family
Posted by: Laura Furr at May 24, 2008 2:14 PMJust another HLHS mom sitting in the hospital with her little one. Brady ( 3 months, post Glenn 5 days) is sending his best wishes to Samson. We can handle the bumps in the road. A little boy named Daniel w/ a CHD brought by some tennis shoes for Brady yesterday. Attached to them was a note that said a heart life is a marathon not a sprint. So think of the speed bumps as a chance to really sit back to appreciate those gifts we are given. Our heart kids are true gifts from God and make us all stronger! Our best to your family..
Posted by: Lisa at May 24, 2008 4:18 PM::thinks happy thoughts for Sammy::
Posted by: julie at May 24, 2008 4:52 PMI'm so happy to hear that Sammy is doing well! He's a little fighter!
Posted by: bird at May 24, 2008 9:14 PMPraying for you guys. As you know,we did "bumps" post-norwood.. Hope it's all smooth sailing SOON!! (Seth sends heart hugs to his "mentor buddy" Sammy!)
Posted by: Kahryn at May 25, 2008 12:33 AMPraying for you guys. As you know,we did "bumps" post-norwood.. Hope it's all smooth sailing SOON!! (Seth sends heart hugs to his "mentor buddy" Sammy!)
Posted by: Kathryn at May 25, 2008 12:33 AMSooo glad to hear things are going well. The aspect of having to keep him immobile is one I hadn't really thought of before but that would be SO HARD. They just want to go go go. I hope for him that he can get moving soon, especially since it sounds like he's doing well. Positive energy to you all.
Posted by: jesser at May 25, 2008 12:43 AMSending prayers for all of you....especially for Sammy's comfort and fears!
Melinda
mom to Joseph, HLHS
Fontan scheduled June 10th in Boston!
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This Hope for HLHS site belongs to Erika, Jason & Samson
(((sguh))) Still here and still sending all the positive energy I have. :)
Posted by: M@ at May 24, 2008 9:28 AM