Well, I thought I'd be using this site a lot more to keep in touch with family and friends during and after Sam's Fontan surgery, but...looks like the party is headed to facebook!
Afraid this blog is a bit too clunky to use and a bit too hard to access from anything short of a laptop. So, as one friend put it: "Welcome to the dark side." I finally got a facebook account.
If you'd like to keep up with Sam's (and our) progress over the coming days, weeks, months, etc, check in with one of the following:
"Sam's Heart Journey" page on facebook.
"Jason Leclaire" on facebook.
Good night all and thank you so much for being part of our journey and our strength for the last four years.
Monday, June 29, 2015
Saturday, June 13, 2015
Back in the CPCU
Gosh. I can't believe it's been two days since I posted anything.
And how long has it been since I used the word, "Gosh"?!
Anyway, to the point. Sam had a long, difficult, but good day today. This morning, they pulled his chest tubes and an IV from his foot. This afternoon, they pulled his pacemaker wires and changed his chest dressing. This evening, they pulled his central line. Woof. That's a lot of painful moments for one day.
On the brighter side, we were moved to the Cardiac Progressive Care Unit (CPCU). That means one step closer to home. And while he didn't love the trip over, since he got here, he's been happier not to be messed with so much. He keeps asking "Am I all done yet?" He also took another walk and got to choose a toy from the "treasure chest." He picked the "purple flowers." A lei with green and gold trim. Kid looks like he just got back from Mardi Gras. Nice.
A bit premature, perhaps, for that sort of celebration, but it's a good start.
Wow, just now I almost wrote, "Here's to continued good days," but I couldn't. I've been thinking a lot today about my inability to accept the smooth progress so far. Every time someone calls Sam a "rock star," or says, "Yeah, you'll be out of here soon," I flinch a little. In some cases, I correct them: "So far, so good," I say, "but who knows what is yet to come." Maybe it's because I've heard those songs so many times before that I don't trust them.. Maybe it's because our first time through (the Norwood and the Glenn), hearing the screech of a needle across an old LP was more common than the sweet song of home . So I remain stoic. It's been a good day so far. I'm glad Sam has progressed as well as he has. But I have little interest in embracing an uneventful journey through the CI, the CP, and then home until it actually happens. And, frankly, even then the little man is going to have to earn my trust back slowly and over time.
I'm looking forward to that time. In the meantime, day by day...hour by hour. Good night, all. Right now, Sam is sleeping sweetly in a room in the CP far, far away from the trauma of the surgery itself. Let that be the thought of the moment.
And how long has it been since I used the word, "Gosh"?!
Anyway, to the point. Sam had a long, difficult, but good day today. This morning, they pulled his chest tubes and an IV from his foot. This afternoon, they pulled his pacemaker wires and changed his chest dressing. This evening, they pulled his central line. Woof. That's a lot of painful moments for one day.
On the brighter side, we were moved to the Cardiac Progressive Care Unit (CPCU). That means one step closer to home. And while he didn't love the trip over, since he got here, he's been happier not to be messed with so much. He keeps asking "Am I all done yet?" He also took another walk and got to choose a toy from the "treasure chest." He picked the "purple flowers." A lei with green and gold trim. Kid looks like he just got back from Mardi Gras. Nice.
A bit premature, perhaps, for that sort of celebration, but it's a good start.
Wow, just now I almost wrote, "Here's to continued good days," but I couldn't. I've been thinking a lot today about my inability to accept the smooth progress so far. Every time someone calls Sam a "rock star," or says, "Yeah, you'll be out of here soon," I flinch a little. In some cases, I correct them: "So far, so good," I say, "but who knows what is yet to come." Maybe it's because I've heard those songs so many times before that I don't trust them.. Maybe it's because our first time through (the Norwood and the Glenn), hearing the screech of a needle across an old LP was more common than the sweet song of home . So I remain stoic. It's been a good day so far. I'm glad Sam has progressed as well as he has. But I have little interest in embracing an uneventful journey through the CI, the CP, and then home until it actually happens. And, frankly, even then the little man is going to have to earn my trust back slowly and over time.
I'm looking forward to that time. In the meantime, day by day...hour by hour. Good night, all. Right now, Sam is sleeping sweetly in a room in the CP far, far away from the trauma of the surgery itself. Let that be the thought of the moment.
Thursday, June 11, 2015
Extubated
As of a little over an hour or so ago, Sam was extubated. No more breathing tube!
I want to say two things before I try to get some much-needed sleep:
1) Thank you all for your thoughts today! I'm always amazed by how inspiring Sam's story is to others; he's an amazing kid, and I know he would appreciate all the good thoughts people sent his way today.
2) I'm also amazed at how quickly long-unneeded habits can return. I find myself repeating the habits--habits that I'd forgotten I'd even developed--that got us through this the first time around, over four years ago. We set Sam's room up identically; we set the "sleep room" alarm reminding us to call for a room each night (turns out I still had the phone number in my contacts list); we follow the same patterns of shift-taking so that both Kristin and I can each sneak in bits of rest throughout the day; we practice tunnel-vision, almost not even seeing the other patients who, while we care about them, can't earn our attention in this moment. It's remarkable how quickly we remember how to endure.
To endurance,
Jason
I want to say two things before I try to get some much-needed sleep:
1) Thank you all for your thoughts today! I'm always amazed by how inspiring Sam's story is to others; he's an amazing kid, and I know he would appreciate all the good thoughts people sent his way today.
2) I'm also amazed at how quickly long-unneeded habits can return. I find myself repeating the habits--habits that I'd forgotten I'd even developed--that got us through this the first time around, over four years ago. We set Sam's room up identically; we set the "sleep room" alarm reminding us to call for a room each night (turns out I still had the phone number in my contacts list); we follow the same patterns of shift-taking so that both Kristin and I can each sneak in bits of rest throughout the day; we practice tunnel-vision, almost not even seeing the other patients who, while we care about them, can't earn our attention in this moment. It's remarkable how quickly we remember how to endure.
To endurance,
Jason
Breathe
Okay, surgery is done. Surgeon said it went well. Anesthesiologist agreed. Will be another hour or so before we get to see the little guy. Now waiting for the follow-up.
Still going...
Fontan is proceeding apace.
They are just finishing the connection from the IVC to the pulmonary artery. Some work still remains, but so far, so good...
They are just finishing the connection from the IVC to the pulmonary artery. Some work still remains, but so far, so good...
We are "Go"
This is Sam on the way to his Fontan. Pretty cool kid, huh?
It's 8:06, and he's been in the Operating Room now for about half an hour. We expect the whole process to take on the order of 4+ hours. Of course it depends on how things go. Importantly, however, we are go...
Thanks for keeping up with us! More updates to follow...
If you'd like more frequent updates, "like" the facebook page: "Sam's Heart Journey." My wife will be providing updates there. Sigh...here we go...
NASA: Give me a "Go - No Go"...
It's game day...
I've often likened this moment to a NASA mission: if conditions aren't absolutely perfect, they won't launch.
Today's complicating factor: following Monday's cath, Sam developed a slight fever (100.4). This is not common. It's not really uncommon either. Which is confusing.
Doctors want to be sure that this fever is cath-related rather than the start of a new illness, so they will do a physical examination and a blood test (looking for new antibodies) before surgery this morning. If it is as we suspect--minor fever in response to cath--we go; if it seems to be the start of a cold, we stay on the ground.
My WAG estimation: 80-20, we go.
We'll find out in about an hour or two...
I've often likened this moment to a NASA mission: if conditions aren't absolutely perfect, they won't launch.
Today's complicating factor: following Monday's cath, Sam developed a slight fever (100.4). This is not common. It's not really uncommon either. Which is confusing.
Doctors want to be sure that this fever is cath-related rather than the start of a new illness, so they will do a physical examination and a blood test (looking for new antibodies) before surgery this morning. If it is as we suspect--minor fever in response to cath--we go; if it seems to be the start of a cold, we stay on the ground.
My WAG estimation: 80-20, we go.
We'll find out in about an hour or two...
Monday, June 8, 2015
Round 3: Pre-Fontan
Call this a blog resurrection.
We haven't used this news outlet since we had a last-minute, untimely cancellation of the Fontan last summer. If you've forgotten (or never knew), we were within 5 minutes of out the door for Sam's Fontan pre-op last July when TCH called us and told us to stay home: our surgeon had been injured in a bicycle accident, and we had to wait.
Since then, Sam has had a relatively "normal" year, only spending two days in hospital--one for a dental procedure, one for a sedated echo and MRI. Here's a picture of Sam with Henry in a rare moment of mutual sweetness (don't mind the lack of pants--that's baseline for Sam):
It was this second procedure, the MRI, that has landed us in the "Cath Lab" three days prior to the rescheduled Fontan. The fear of waiting a full year to complete the big surgery was that Sam might develop "collaterals," which he has,indeed, developed and had confirmed by MRI. If you checked out the previous weblink, Sam specifically has "Systemic Arterial Collaterals" which would be likely to complicate the outcome of his Fontan.
So...we will "coil" at least some of the collaterals, which means they will no longer shunt blood flow in unwanted directions. Our hope is that by doing so Sam will have fewer complications after the Fontan. In the meantime, he's still in the Cath Lab and should be out in a little while.
As a number of people have been asking, we will, again, be using this site to communicate Sam's progress over the coming months. In addition, if you "Like" Sam's Heart Journey on facebook: you can get shorter, more frequent updates than this site will offer. We'll keep you updated at least one more time before game day on Thursday. Be sure, those of you who got them, to wear your Sam's Heart T-shirts on Thursday!
And, as always, thank you for all of your thoughts and support!
The Leclaires
We haven't used this news outlet since we had a last-minute, untimely cancellation of the Fontan last summer. If you've forgotten (or never knew), we were within 5 minutes of out the door for Sam's Fontan pre-op last July when TCH called us and told us to stay home: our surgeon had been injured in a bicycle accident, and we had to wait.
Since then, Sam has had a relatively "normal" year, only spending two days in hospital--one for a dental procedure, one for a sedated echo and MRI. Here's a picture of Sam with Henry in a rare moment of mutual sweetness (don't mind the lack of pants--that's baseline for Sam):
It was this second procedure, the MRI, that has landed us in the "Cath Lab" three days prior to the rescheduled Fontan. The fear of waiting a full year to complete the big surgery was that Sam might develop "collaterals," which he has,indeed, developed and had confirmed by MRI. If you checked out the previous weblink, Sam specifically has "Systemic Arterial Collaterals" which would be likely to complicate the outcome of his Fontan.
So...we will "coil" at least some of the collaterals, which means they will no longer shunt blood flow in unwanted directions. Our hope is that by doing so Sam will have fewer complications after the Fontan. In the meantime, he's still in the Cath Lab and should be out in a little while.
As a number of people have been asking, we will, again, be using this site to communicate Sam's progress over the coming months. In addition, if you "Like" Sam's Heart Journey on facebook: you can get shorter, more frequent updates than this site will offer. We'll keep you updated at least one more time before game day on Thursday. Be sure, those of you who got them, to wear your Sam's Heart T-shirts on Thursday!
And, as always, thank you for all of your thoughts and support!
The Leclaires
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