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
Doctor Visits
Fontan
General Updates
Glenn
Life with Sammy
Norwood
Other HLHS families
Support
Surgery & Recovery
Surprises
Test Results
Worrying
I thought it would be important to update with how Sammy has recovered (physically AND emotionally) from the surgery and hospital stay. This was a huge concern and fear for me pre-op - now that he's 2, very aware and very verbal - how would he be affected by what had just happened? I thought it might be helpful to pre-Fontan folks to read about our experience.
Tomorrow is three weeks post-op and 99.999% of the time, you'd never know what he'd been through! Saturday we attended Jack's first birthday party, and there was Sammy, running around with the 4 year olds, soaking them with water guns and laughing his head off. It just floored all of us - how is it possible that he JUST had major open-heart surgery, and here he was, acting like any other energetic, happy, wild little man?
That's not to say there haven't been small signs of the emotional rollercoaster of the hospital stay. The first week or so, he'd wake in the middle of the night saying things like, "NO! I don't want to!" We assumed it was leftover from the night nurses taking vitals, giving meds, etc. He hasn't done it since, and has fallen back into sleeping through the night. He will sometimes ask us to lay down next to him, but otherwise he's falling asleep on his own. This was a huge concern for me - I was afraid he'd be afraid to be alone. Nope. Yay!
He's not a fan of being shirtless. If you pull up his shirt, he yanks it back down and tells us not to do that. Again, I'm pretty sure it has to do with constant attention to his chest by a rotating slew of strange doctors and nurses. He has gotten back to enjoying his baths, though. Woo hoo!
He has started something we're not sure is simply a two-year-old thing that coincides with coming home from the hospital, but he'll say things like, "No, mama, I don't like that game" or "No, daddy, don't say that." I pouted once and he had a meltdown - "No mama, don't do that! Don't make that face!" I'm sure it also has to do with control and feeling the need to control something, anything since he had so little control in the hospital.
Physically, we still can't lift him under the arms. The scab is just about all gone from his incision, and has left behind a thin, white scar. He did develop a surface infection at the incision site, but it's cleared up with antibiotics. They cut the sutures from his chest tube sites last week. We have a check up with his cardiologist in three months; otherwise, they anticipate closing the fenestration by cath in a year or two, unless his sats don't improve on their own (he's hanging around 80). In that case, they'll close it sooner.
His appetite came back with a vengence about 2 1/2 weeks post-op. He's back to eating just as he was before the Fontan - here's hoping he gains some weight! He didn't lose much in the hospital - about .1kg - but he's always been on the very skinny side, and the weight he did lose seems to have come right from his arms and legs. They're soooo skinny!
All in all, aside from the occasional random things he remembers about the hospital (for example, "They have lollipops, just like in the hospital!"), he's back to the little boy pre-surgery. He doesn't seem any worse for the wear, except for the little blips of need for control.
Now if only this oppressive heat wave would lift so I can get him outside and back to enjoying summer!
Comments (11)
I'm slowly emerging from a two year fear-of-the-Fontan-induced fog.
(How's that for some mean alliteration?)
I've said to a few people that I feel like we left the hospital with a newborn. Not in the sense that we had this helpless creature to take care of, but instead we left with one with a future wide open in front of him. When we left after he was born, we had steps to get through - we'll let ourselves think about that after the Norwood or we can plan for that when we get through the Fontan. While I would sometimes think about Sammy's life as he grew older, I never let myself fully imagine all the possibilities that lay before him. I never let myself imagine him at 6 playing t-ball, or at 10 riding bikes with his friends. I couldn't embrace these dreams that parents have for their children's lives. Everything always stopped at the Fontan, and while it was my own doing, I resented it. I resented how easily others could envision their child's world as they grew, resented how I felt so trapped by the what-ifs of the three surgeries.
So when we left this time, I imagined it's how new parents feel, leaving the hospital with a whole new life in their hands. I know nothing is a given and simply making it through (simply - ha!) the three surgeries is no guarantee, but it's a damn good start.
I'm still plagued by the mini-anxiety attacks I would have pre-Fontan. I'm often still caught off-guard that we are now through the very thing that's been over our heads for two years - it feels as though my brain hasn't rewired itself to realize that we are past this surgery. I'm amazed that it is now June, and May - oh, how I dreaded May - is behind us. Is it really June 1st? How did it all go by so quickly? How is it that for two years this surgery loomed so large, and now it's done? It's not even two weeks past and Sammy's quickly getting back to the little boy we love so much. In fact, yesterday he played at the playground, climbing up the structure and slide and running around - you'd be surprised he had just had open-heart surgery less than two weeks ago!
Now we can get back to raising one amazing little boy.
Thursday night, Sammy developed a fever, a runny nose and a cough. The cough seemed to be the worst of it, as it really hurt him (because of his chest) every time he coughed. The runny nose continued, but Friday morning he woke with a 101-102 fever that just wouldn't respond to Tylenol or Motrin. He was miserable - up there with the worst we saw him in the hospital. He didn't want to do much of anything except rest on the couch. He's still quite traumatized from the events of the last two weeks, so taking his temperature or giving him medicine would turn into complete meltdowns.
After finally talking to his cardiologist around noon, we packed up Sammy and took him to his pediatrician. The main concerns were infection and pneumonia, both not common - but not uncommon - after surgery. Our pediatrician sent us on our way back to Children's. I had several meltdowns along the way - I knew this meant more xrays and bloodwork for Sammy, and my heart broke having to put him through that again.
He handled things fairly well considering, and we even saw some smiles out of him when he went out on the CHB playground pre-bloodwork. The xray came back clear (a-freakin'-men, as that probably would have meant pneumonia), but the bloodwork came back with an elevated white cell count. Since his incision sites look clear - no sign of irritation or infection - Dr. Brown chalked it up to an ill-timed upper respiratory infection and sent us home with amoxicillin. Sammy's fever seemed to have broken while we were there, and he was in MUCH better spirits (after a trip to the hospital - who would have thought?), so we went out to dinner to avoid rush hour trying to get back home.
Hopefully (knock on wood), things will settle down and we can get to getting Sammy back to feeling happy and safe and healthy. Then mama and daddy can work on relaxing a bit finally, too!
Comments (4)
This time last week, we were waiting to hear from the surgeon about how Sammy's surgery went.
One week later, we are HOME!
I will write more later, have a few thoughts and reflections on the whole experience, but all that matters right now is that we are home, with Sammy, the windows are open, fresh air and sunshine, Dragon Tales on the TV, a puzzle is scattered all over the floor and the kitchen is covered with pots and pans and drumsticks.
Being home has never felt so good.
Comments (30)
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.
Comments (23)
Not going to make this its own post, and I thought it deserved to be at the top and not the bottom, so...
We are on the floor. Sammy spiked a bit of a fever shortly after we got over here (38°C), but was able to play a bit in the playroom. He was sitting up, playing with the toys and talking like Sammy. He wiped out after about 15 minutes, came back to our (private!) room (on the FLOOR!), ate some jello, threw up a bit and is now half asleep and watching Little Einsteins.
Now for the original post from today:
2:30 pm update
1. And there was poop! And more poop! He's still unhappy and fussy, but he did just have open-heart surgery 5 days ago.
2. He's off oxygen completely. Holding his sats at 82. Took the cannula away - all that remains are the two circle stickers on his cheeks that were holding the cannula in.
3. Got the clearance to get the pigtail and remaining chest tube removed. Should happen soon.
4. IV in his foot has been removed. He's wearing socks!
This leaves the tubes (which are going shortly) and an IV in his hand. So in two hours or so - when we could be on our way to the FLOOR - he will only have an IV in his hand.
Did you catch that? On our way TO THE FLOOR? Where he will be decked out in a tie-dye shirt, sweats and his slippers? And hopefully playing in the playroom and going for a walk in the wagon outside?
Sure, I just jinxed us, but the orders are in and if the chest tube removal goes well, off we go!
Here's the checklist to get us home: stable blood pressure (has, but needs to maintain). Eating and drinking regularly. Clear chest xrays (has, but needs to maintain). Good oxygen levels (has, but needs to maintain). Good, stable, non-arrhythmic sinus rhythm (again, has, but needs to maintain). No infections (doesn't have and hopefully won't!). They just want to see that he's well and nothing new crops up.
Not dancing in the halls yet, but definitely starting to breathe a little easier. Whew.
Comments (23)
Doing well. Still not eating, but he is asking for his bottle & milk more often. Updates as of 11:30am:
- One chest tube came out this morning and the pigtail (from yesterday) should be coming out around 2. That leaves one tube in, and even that has drained almost nothing since two days ago.
- There's talk of being able to take him outside today. It is GORGEOUS here and the fresh air, sunshine and change of scenery would be really good for him.
- There's also talk of moving to the floor today. I'm not getting my hopes up too high, but it would definitely be nice to be able to take him to the playroom.
- Not much sleep last night. Sammy's belly is quite backed up and nothing seems to be working. It's causing a lot of pain for him - sometimes we're not sure if the crying is a result of the chest tubes or the lack of "movement", if you catch my drift. The three hours of interrupted sleep switching from his bed to the parent bed and back is starting to catch up with me. Actually, I think ALL of this is starting to catch up with both of us.
Thanks so much for all your thoughts and prayers and positive energy. Our heart-friend Drew had surgery on Friday and is recovering right now as well. If you could send some of that love his way, we'd appreciate it. (I know, we ask so much! :-))
Comments (4)
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!
Comments (19)
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. :-)
Comments (24)
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).
Comments (22)
Sammy is now off the ventilator. He's a bit raspy and angry as all hell. He's also off the sedative, but since he's so worn out, we're hoping he will rest and sleep for the next hour or two. He had been tied down to the bed all day because he would wake and thrash, but we've untied one arm now and he seems a bit better with it now that he can put his arm up under his head (how he tends to sleep at home). He's still very out of it, but should be coming out of it over the next few hours. He does wake and freak out, and we're very limited in our ability to console him as he still has his central and arterial lines in, as well as EKG leads, chest tubes and other various things. When he wakes (in two hours), we might be able to start giving him small sips or licks of a popsicle, which is good, since he was mouthing for apple juice while he was still intubated.
Please continue to keep him in your thought and prayers - and a little extra our way as we deal with a very unhappy, confused, hurting Sammy wouldn't hurt either. We were told that today is the hardest day for the parents, and they weren't kidding. Thanks.
Comments (20)
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.
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The boys are still sleeping - we all slept, which is good. Not as well as we would have at home, and I kept waking to see if Sammy wanted any milk (until 2) or juice (until 6), but I think we did surprisingly well. I'm going to crawl back into bed, hope to keep my thoughts as settled as they've been, and rest a bit more until we have to get up in thirty minutes or so. I'm surprised at how okay I am. I'm ready to be done with this. I'm ready to get him through recovery. I'm ready to be done with the Fontan hanging over our lives. Will I have a complete meltdown when they take him? Probably - but that's to be expected, right?
We check in at 7:30, and they'll sedate him enough before they take him to surgery, which we expect to be between 8 and 8:30. Surgery, once started (after all the lines are in, etc), should take 4-5 hours. My hope is that we get to see him sometime between 3 and 4, but we'll see how it all goes.
Jay or I will be updating this post as things progress. (I'm contemplating coming back to the hotel room right across the street and trying to sleep through the waiting.) Thanks so much for keeping us all in your thoughts and prayers today. We are so blessed to have such wonderful support and love in all of you.
Updates
8:45 - They gave Sammy a good dose of Versed and Ketamine and doped him up quite nicely. Everything was hysterical to him, and he was all sorts of floppy. They took him back and we broke down. Pulled ourselves together and headed out to find food and family. We'll update with the next call from the nurse.
9:30 - They called to let us know that everything was going great. The lines are in and Dr. Fynn-Thompson will begin the incision soon.
11:30 - Still working through the scar tissue.
12:30 - He's on bypass. Next update will be when they're taking him off bypass. She couldn't give us a timeframe, as surgery is different for each kid. Either way, she'll check in with us in about an hour and a half.
1:45 - Surgery is over! They're warming him up and hope to start getting him off bypass in the next half-hour or so. Then they'll close him up and bring him up to the CICU. We'll get the bypass update soon. We're not out of the woods yet, but few more steps and then we can see him. Please pray that coming off bypass is easy for him, as that can be tough for some kids.
2:00 - Sammy is off bypass!! They are closing him up and we should be meeting with his surgeon in the next half-hour.
2:30 - Dr. Fynn-Thompson, Sammy's surgeon, just came down to see us. Sammy is doing GREAT! Said the Fontan was about as routine as they come. His heart function is good, his valve regurgitation is better than it was before the Fontan (it was mild then, but they wanted to see if they needed to tighten up his mitral valve at all while they were in there). He didn't require any extra blood (aside from what was needed for bypass). WOO HOO! They're bringing him up to the CICU and getting him settled in. We'll be able to see him in about an hour or so - he'll be intubated, IVed up and sedated for a while, and the next 24 are still considered critical, but surgery is DONE!!!
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We're done with pre-op. It took forever, but a lot of that was sitting and waiting for the appropriate people to come and meet with us. Sammy did great through all of it - he's such my brave little knight. Pre-Fontan parents out there (or really, any families facing some sort of medical procedure) - go buy some small toys. These were HUGELY successful in keeping Sammy occupied and distracted from whatever was going on (xray, bloodwork, EKG, etc). We picked up a bunch at Michael's - little bug finger puppets, some spinny flashlight thing, etc. Each time we needed something "fresh" to get him through something, into the bag we went. And when he wakes from his nap, there's a little toy waiting for him in his Magic Treasure Box, too, for being so brave today.
We are to be at Admitting tomorrow morning at 7:30am. They expect surgery to last 4-5 hours. I'm anxious to have it done with - it's been hanging over our heads for way too long - but I'm terrified to hand him over again. The odds are in his favor (knock on wood), but hello - it's open-heart surgery. This is huge. Everyone we spoke with today focused on recovery and not the surgery, which was heartening. It almost felt as though Fontans are routine around here (which, at 1-3 a week, I guess they are), which was comforting. But still - when it's your kid? I have no idea how we're supposed to say goodbye to him and send him off tomorrow morning. I'm grateful we got to see his surgeon, Dr. Fynn-Thompson, who also performed Sammy's first two surgeries. I'm glad I got to say to him, Please take care of him. I know he will, but it was comforting to say it out loud.
Thank you to everyone for all the love and strength and prayer and wishes. A special thank you so much to my students, who left comments wishing us well and sharing good thoughts and love. You guys made me smile SO MUCH this afternoon when I really needed it most. You truly are compassionate, wonderful kids. And to the Sewing Mamas out there (and you, Deb!), thank you for your kindness and for Sammy's little goodies. They are awaiting the Treasure Box for when he's about after surgery. There are just so many people who have shown such love, I wish I could hug you each in person. Know that you are held in our hearts and that your words and energy are helping to carry us through this.
This time tomorrow, the surgery should be behind us and we can focus on recovery and getting Sammy home. Right now, I think I'm going to try to nap a bit with Sammy and Jay.
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We've gotten some comments and emails wondering where we are and if we're okay. We're less than a week away from Sammy's surgery, and honestly, I haven't written anything because I'm starting to sound like a broken record. Sad. Anxious. Terrified. Angry. Wash, rinse, repeat.
Thank you for showing your concern and friendship. Know that even if we haven't written you back, we truly appreciate that you're thinking of us. It's just easier right now to not talk or write about it - everything sends me over the edge, so the further I keep myself from it, the better I can get through the day.
The schedule is this: Monday we head to the hotel. Tuesday is pre-op, which includes an EKG, an echo, bloodwork and an xray, at the minimum. Family will be coming into town and staying at the hotel with us. Wednesday, he goes in for the Fontan. We don't know the time and won't until Tuesday, but we're hoping for first case. They expect to keep him fairly sedated for the hours after, only waking him up enough to make sure he can breathe over the ventilator before they'll extubate him. If all goes well, he'll move to stepdown a day or two after surgery. Average recovery is 7-10 days, during which we'll take turns staying with Sammy and napping/sleeping at the hotel - one of us is with him at all times, and family will be there too. As long as he is doing well physically, I imagine we can get through the rest.
We will update here pretty regularly to keep everyone in the loop. Otherwise, please understand if we're not in touch personally. We know you're thinking of us, and please know - we appreciate it so very much.
If you're local and well (not a single sniffle!), we'd love for you to visit post-surgery. You can email us or call the cellphones, and if Sammy's up for visitors, we'll figure out the details. In the meantime, we could use some good thoughts, positive energy and prayer to help carry us through. Cause really? This is the hardest thing we've ever had to do.
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