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
Thursday, July 24, 2014
Waiting for Fontan
Hello friends,
This is Jason. I've been trying to figure out how to explain the most recent update to Sam's Fontan schedule, and it is not simple. As a result, I've decided to offer three tiers of information; feel free to read whichever suits your fancy.
Short and sweet version: Sam's Fontan has been indefinitely postponed. He will undergo the surgery in the late spring or early summer of next year, 2015.
Medium, medical version: For a variety of reasons, it is not the most desirable option to introduce a new surgeon to Sam's case. In order to await the surgeon's recovery and give him a little time back in the operating room--it is also not optimal to have Sam's complex case be among the first procedures back--we would have to wait until around October or November, which, not incidentally, coincides with the onset of cold/flu season. Because Sam has a relatively small left pulmonary artery, he is likely to have respiratory complications following the Fontan. Consequently, if we can avoid colf/flu season, we should. Which leaves next spring. We do not consider the Fontan an elective procedure for Sam, but there is an optimal window in which the surgery might take place. At present, we are near the beginning of the window; waiting until May or early June of 2015 puts us near the end of the window. There are some risks in waiting until then--specifically Sam's body may form collateral veins bypassing his Glenn physiology and lowering his oxygen saturation to dangerous levels; however, we consider the risks to be tolerable in order to avoid the bigger risks of rushing a surgeon or having Sam try to recover at the worst time of year for him.
Literary version: At the end of each of two acts in Samuel Beckett's Absurdist play, Waiting for Godot, one main character says to the other, "Well, shall we go?" The other responds, "Yes, let's go." Famously, the stage directions read: They do not move. This is the great existential dilemma in the play: how can a person act when confronted with uncertainty and an ability to understand his or her role in the world? The characters, to their great chagrin, make continuous plans to progress, yet they are unable to effect any real actions; instead, they are relegated to passing the time with irrelevant and often ridiculous banter. So it goes. Three times now, we have scheduled this Fontan. Three times, for reasons entirely beyond our control, we did not move. Now, for the fourth time, we have rescheduled this critical open-heart palliation...it will just be done a full calendar year later than we had thought. The waiting is absurd. But we are powerless to change it. So, all of the measures we took to make this happen now have been a waste. All of the buildup has been, ultimately, irrelevant. So we will gather ourselves to wait again. We will do our best to remain patient. To pass the time in ways that feel important. With that in mind, here is a brief update on Sam the person rather than Sam the patient.
Sam is growing and learning just like other kids his age. He especially loves letters and sounds. Check out the magnetic board; he just wrote his name for the very first time: S-A-M spells Sam!
When I took this picture the other day, Sam said, "Go away, please. I'm reading." How cute!
This is Jason. I've been trying to figure out how to explain the most recent update to Sam's Fontan schedule, and it is not simple. As a result, I've decided to offer three tiers of information; feel free to read whichever suits your fancy.
Short and sweet version: Sam's Fontan has been indefinitely postponed. He will undergo the surgery in the late spring or early summer of next year, 2015.
Medium, medical version: For a variety of reasons, it is not the most desirable option to introduce a new surgeon to Sam's case. In order to await the surgeon's recovery and give him a little time back in the operating room--it is also not optimal to have Sam's complex case be among the first procedures back--we would have to wait until around October or November, which, not incidentally, coincides with the onset of cold/flu season. Because Sam has a relatively small left pulmonary artery, he is likely to have respiratory complications following the Fontan. Consequently, if we can avoid colf/flu season, we should. Which leaves next spring. We do not consider the Fontan an elective procedure for Sam, but there is an optimal window in which the surgery might take place. At present, we are near the beginning of the window; waiting until May or early June of 2015 puts us near the end of the window. There are some risks in waiting until then--specifically Sam's body may form collateral veins bypassing his Glenn physiology and lowering his oxygen saturation to dangerous levels; however, we consider the risks to be tolerable in order to avoid the bigger risks of rushing a surgeon or having Sam try to recover at the worst time of year for him.
Literary version: At the end of each of two acts in Samuel Beckett's Absurdist play, Waiting for Godot, one main character says to the other, "Well, shall we go?" The other responds, "Yes, let's go." Famously, the stage directions read: They do not move. This is the great existential dilemma in the play: how can a person act when confronted with uncertainty and an ability to understand his or her role in the world? The characters, to their great chagrin, make continuous plans to progress, yet they are unable to effect any real actions; instead, they are relegated to passing the time with irrelevant and often ridiculous banter. So it goes. Three times now, we have scheduled this Fontan. Three times, for reasons entirely beyond our control, we did not move. Now, for the fourth time, we have rescheduled this critical open-heart palliation...it will just be done a full calendar year later than we had thought. The waiting is absurd. But we are powerless to change it. So, all of the measures we took to make this happen now have been a waste. All of the buildup has been, ultimately, irrelevant. So we will gather ourselves to wait again. We will do our best to remain patient. To pass the time in ways that feel important. With that in mind, here is a brief update on Sam the person rather than Sam the patient.
Sam is growing and learning just like other kids his age. He especially loves letters and sounds. Check out the magnetic board; he just wrote his name for the very first time: S-A-M spells Sam!
Monday, June 30, 2014
Frozen Fontan: An Update from Jason
My dog ate my homework. The cat ate my gymsuit. My surgeon was in a bicycle accident. Got any other good excuses why something is happening late? (Don't worry--he is okay and expected to make a full recovery.)
So...I know many of you have been counting on this site as a way to follow the results of Sam's third major surgery, the Fontan; I'm afraid that will have to wait just a little bit longer. As we were preparing to walk out the door on the way to Sam's pre-op appointments this morning, we got a phone call that Sam's surgeon suffered a bicycle accident over the weekend and has been temporarily incapacitated. Recovery will take 6+ weeks and possibly then some.
That means Sam's surgery is OFF for Tuesday. There will be no Fontan this week. Like Sam's favorite movie, it is temporarily "Frozen"...in suspended animation.
We are currently in the process of following up with Children's Hospital to decide on the best course of action for Sam. Will we proceed with a different surgeon? Can it wait until later in the year or even next summer? How will this impact our ability to work this year? Sigh...a lot to think about. Early returns indicate that we will wait until his surgeon has made a full recovery and then proceed with this third and final reconstruction later in the fall. But, as with so many things in our world, that is a big old "What if?" We will be talking to his cardiologist again in a couple weeks to reassess and hear the ideas of his full care team. At that time will we make a "final" decision.
In the meantime, we have a reprieve. Looks like we can start taking our little bubble boy out in public again. We're thinking the aquarium since Grandma and Grandpa are in town. Perhaps we will be able to enjoy the remainder of summer after all.
Anyway, thank you all for caring to read this and keep track of us and of Sam's doings. We will post again once we know more and have a new plan in place. Here are a couple of recent photos to tide you over until the next news...
Jason
Here is Sam riding "Sven" from Frozen. Sam says, "No Sven, we're not going back! She's with her true love!"
Discovering a Hoberman Sphere:
Taking a walk with Dada:
So...I know many of you have been counting on this site as a way to follow the results of Sam's third major surgery, the Fontan; I'm afraid that will have to wait just a little bit longer. As we were preparing to walk out the door on the way to Sam's pre-op appointments this morning, we got a phone call that Sam's surgeon suffered a bicycle accident over the weekend and has been temporarily incapacitated. Recovery will take 6+ weeks and possibly then some.
That means Sam's surgery is OFF for Tuesday. There will be no Fontan this week. Like Sam's favorite movie, it is temporarily "Frozen"...in suspended animation.
We are currently in the process of following up with Children's Hospital to decide on the best course of action for Sam. Will we proceed with a different surgeon? Can it wait until later in the year or even next summer? How will this impact our ability to work this year? Sigh...a lot to think about. Early returns indicate that we will wait until his surgeon has made a full recovery and then proceed with this third and final reconstruction later in the fall. But, as with so many things in our world, that is a big old "What if?" We will be talking to his cardiologist again in a couple weeks to reassess and hear the ideas of his full care team. At that time will we make a "final" decision.
In the meantime, we have a reprieve. Looks like we can start taking our little bubble boy out in public again. We're thinking the aquarium since Grandma and Grandpa are in town. Perhaps we will be able to enjoy the remainder of summer after all.
Anyway, thank you all for caring to read this and keep track of us and of Sam's doings. We will post again once we know more and have a new plan in place. Here are a couple of recent photos to tide you over until the next news...
Jason
Here is Sam riding "Sven" from Frozen. Sam says, "No Sven, we're not going back! She's with her true love!"
Discovering a Hoberman Sphere:
Taking a walk with Dada:
Wednesday, April 9, 2014
Our Big Hearted Three-Year-Old
Since I haven't posted since 2012, I thought I might offer a few important updates on our sweet little Sam. Much has happened--some very bad but some very good.
First, I just wanted to put these two pictures together to celebrate how far Sam has come these past three years:
There's so much to update that I'll make a few lists to keep it concise (and then I'll throw on a bunch of pictures). Let's start with the bad news and then work our way up to the good news....
The bad news:
1. In November, Sam's O2 sats suddenly dropped into the 50s, and we had to call 911 in the middle of the night. Luckily, he only had to spend a few nights in the hospital; it turns out he had a cocktail of nasty viruses brewing in his little body. Some rest and fluids were enough to get him (and Elmo) better.
2. In December, about a week and a half after I had returned to work, there was a shooting at my school, Arapahoe High School (this is Kristin typing). A girl was shot and killed, and the shooter--a student at the school--killed himself in our library. Our school is still suffering terribly.
The okay news:
1. Sam was supposed to have a heart catheterization today. This is to help prepare him for the big Fontan surgery this summer. However, Sam's doctors decided after examining him this morning that his cold would make the cath too risky, and it would be best to wait. So we went out to breakfast instead and had chocolate chip pancakes. The cath, by the way, is now rescheduled for June 4--a little less than a week before his scheduled Fontan.
Students--if you are reading this right now, rest assured that it means I will be back at school Thursday and Friday.
The great news:
1. Sam is now a big brother, and he is one great big brother. His little brother is named Henry, and he is now six months old.
Henry is obsessed with Sam; if Sam is in the room, Henry has eyes for no one else. And of course, Sam finds it hard to resist a little human who adores him so completely (as long as Henry doesn't grab any of Sam's toys, which pretty much sends Sam over the edge).
2. Despite all the setbacks, Sam is completely age appropriate in all areas of development--gross motor, fine motor, and speech. He loves the alphabet, books, and puzzles, and his current favorite movie is Finding Nemo.
P.S. Sam is particularly interested in Nemo's "lucky fin," which, despite the fact that it never grew quite big enough, turned out to be a source of strength for Nemo.
First, I just wanted to put these two pictures together to celebrate how far Sam has come these past three years:
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| This is Sam around 10 weeks of age; he was suffering a stroke and a terrifying case of endocarditis. He was about to undergo a very risky and early Glenn surgery. |
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| This is Sam at school just a few weeks ago. He loves running around outside with his "new friends," as he calls him, and he's a big fan of the slide. |
The bad news:
1. In November, Sam's O2 sats suddenly dropped into the 50s, and we had to call 911 in the middle of the night. Luckily, he only had to spend a few nights in the hospital; it turns out he had a cocktail of nasty viruses brewing in his little body. Some rest and fluids were enough to get him (and Elmo) better.
2. In December, about a week and a half after I had returned to work, there was a shooting at my school, Arapahoe High School (this is Kristin typing). A girl was shot and killed, and the shooter--a student at the school--killed himself in our library. Our school is still suffering terribly.
The okay news:
1. Sam was supposed to have a heart catheterization today. This is to help prepare him for the big Fontan surgery this summer. However, Sam's doctors decided after examining him this morning that his cold would make the cath too risky, and it would be best to wait. So we went out to breakfast instead and had chocolate chip pancakes. The cath, by the way, is now rescheduled for June 4--a little less than a week before his scheduled Fontan.
Students--if you are reading this right now, rest assured that it means I will be back at school Thursday and Friday.
The great news:
1. Sam is now a big brother, and he is one great big brother. His little brother is named Henry, and he is now six months old.
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| Henry is a mini-Jason and might actually be the happiest person in America. |
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| Fascinated by each other |
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| Luckily, the doctors agree with Sam's assessment that Henry's heart is very healthy! |
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| It took four hours to get this picture. |
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| It took a good week of practice to hold up these three fingers! |
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| Rolling around in his favorite Buckeye hat |
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| Reading at school |
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| Sam and his buddy, Max! |
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| He's definitely known for his goofiness at school. |
P.S. Sam is particularly interested in Nemo's "lucky fin," which, despite the fact that it never grew quite big enough, turned out to be a source of strength for Nemo.
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Tuesday, October 30, 2012
Home!
I think it is safe to say that all of the Leclaires are quite happy to be home. We walked in the door about 30 minutes ago. We are also quite tired, so I'm going to keep this blog short. I posted below a few pictures taken before the cath that I couldn't upload to my computer until now.
Thanks again for all of your kind texts, e-mails, blogs, phone calls, and good thoughts! We are lucky to have so many people taking such wonderful care of us.
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| Sam, or Mrs. Roper? |
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| A very hungry Sam waiting for the cath to begin |
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| One of our few family portraits! |
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| Happy to be reunited with his tunes |
Monday, October 29, 2012
All Done
Sam's cath is over! He did great. Everything went pretty much as expected, and the doctor seemed pretty happy with Sam's overall heart function. While his left pulmonary artery is still stubbornly small, Sam has good pressures and a large right pulmonary artery. According the cath doctor, Sam is a likely candidate for the Fontan surgery--the third and hopefully final major open-heart surgery. Also, the cath doctor is hoping that Sam will not need further intervention until the Fontan.
Here is a picture from the cath--you can see the difference in size between the left and right pulmonary arteries (dyed for the cath):
What is perhaps most alarming about this picture is that there appears to be a small, dark swan swimming around in Sam's upper ribcage. Hmm.
Because of the discrepancy between his left and right pulmonary arteries, however, Sam will likely experience some complications after his Fontan and have a lengthy hospital stay (at least a month), but he is squarely in the candidate range. He just needs to keep growing and gain about five more pounds. In the world of hypoplastic left heart syndrome, this is what we call cautiously optimistic news. My favorite moment with the doctor, though, was when he told us that Sam is a "very popular guy around here." He is a pretty popular guy with us, too.
Right now, Sam is playing with his portable DVD player. He just sucked down some Pediasure and seems to be feeling alright, though a bit out of it. His many "friends" in the cardiac progressive care unit were quite excited to see him, and even more excited that he managed to stay out of the hospital for so long. With a little luck, in a couple of hours he'll snuggle up with Wubbie, get a good night's sleep, and go home tomorrow so he can get back to his favorite hobby: sitting on the cat.
Thank you for all of your prayers, wishes, and good thoughts.
Here is a picture from the cath--you can see the difference in size between the left and right pulmonary arteries (dyed for the cath):
What is perhaps most alarming about this picture is that there appears to be a small, dark swan swimming around in Sam's upper ribcage. Hmm.
Because of the discrepancy between his left and right pulmonary arteries, however, Sam will likely experience some complications after his Fontan and have a lengthy hospital stay (at least a month), but he is squarely in the candidate range. He just needs to keep growing and gain about five more pounds. In the world of hypoplastic left heart syndrome, this is what we call cautiously optimistic news. My favorite moment with the doctor, though, was when he told us that Sam is a "very popular guy around here." He is a pretty popular guy with us, too.
Thank you for all of your prayers, wishes, and good thoughts.
Late, but finally on our way
Well, after three and half very long hours of entertaining a very hungry and dehydrated one-and-a-half-year-old in a tiny hospital room, the cath is finally underway! Here is the news we have so far: They are going to balloon both the left and right pulmonary arteries because both are narrow, but they are not going to coil off any collateral veins. Here are a few pics of the fun and excitement of the waiting room:
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| Wild rides in the stroller while waiting for the cath |
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| Being entertained by Smithy |
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| Jason and I in our HAZMAT suits--ready for Halloween! |
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| Jason and Jeff snuggling up with the crossword |
Sunday, October 28, 2012
Hello?
Jason was rummaging obsessively through our lower kitchen cabinets. “So I’ve looked everywhere,” he said, “and I still can’t find it. I looked in the T.V. cabinet, in his toy baskets--” And here I stopped him, because I always like to be the one who really uncovers the mystery. While Jason did appear earnest in his search for our missing home phone, I’m the one always paying attention to where Sam’s little hands hide things. When Sam walks around, for example, shaking my green tea K-cups, I take note of whether they wind up in my measuring cups, under the couch, or, his personal favorite--in the chip and dip fiestaware.“Did you look in the shoe basket?” I asked, and he looked at me, saying, “The shoe basket, the book basket, the hallway closet, although I don’t know how he could actually open that, under the kitchen sink, under the bathroom sink. I can’t think of any other place he could have possibly hidden the phone.” I had to admit that he had been thorough in his investigation.
“Can you think of any other places?” he asked, and again, I had to admit that I couldn’t.
At that moment, our primary suspect came stomping through the kitchen, holding the TV remote control to his ear and pretending it was a phone. Babbling in some elfish language, he seemed pretty happy with whomever was on the other line of this imaginary conversation. Then, without looking up at Jason or me, Sam marched over to the trash cabinet, opened it up, perfunctorily dumped the remote control inside, closed the door, and wobbled away humming “Twinkle Twinkle Little Star.”
“Do you think that’s what happened to our phone?” I asked Jason.
“Could be,” he said, rubbing his jaw. “Could be.” Trash day was yesterday, and the phone had been missing for a week.
I watched Sam suspiciously as he picked up my cell phone from the coffee table. Just two weeks ago, he figured out how to unlock my phone and sent out his very first text message. It was basically the isolated letter “q” sent in about eight consecutive texts to a very understanding man in our English department.
Luckily, Sam had only succeeded in absconding with the home phone, not our cell phones. This was especially important this week since we had been waiting for a phone call from Sam’s cardiologist, Dr. Buckvold. I still feel shy about calling her “Shannon,” even though that’s how she introduces herself when she calls and how she signs her e-mails. She just seems like far too important of a person to be called by her first name.
We were waiting for her to call and let us know if Sam’s cold was going to be a major issue in his upcoming heart catheterization, which was now less than a week away. And Sam, to throw in a little extra drama, had been coughing up a storm...not really the best scenario for a one-and-a-half-year-old about to undergo general anesthesia for five hours and rely on a ventilator to breathe.
But after a hurried trip to Sam’s regular pediatrician the next day and an evening phone call from Dr. Buckvold the next night, I felt slightly reassured about Sam’s catheterization. Slightly. Basically, we all came to same conclusion that with flu and RSV season coming quickly upon us and Sam in daycare, this might be our best shot. As long as the anesthesiologist was game, the cath was still on for Monday, October 29 at 10 am.
Now, as I sit down at the kitchen table to type this, it’s the night before Sam’s cath. Jason is loading the dishwasher, I'm trying to put off packing up Sam’s books, toys, and pajamas for our hospital stay tomorrow, and I'm realizing that I have been out of touch with just about everyone. I didn’t update the blog for months. I forgot to tell most people in my department about Sam’s cath. I also forgot to tell most of my friends. I have neglected that lifeline between our crazy hypoplastic left-hearted world and the normal, double ventricle-hearted world.
And it’s not because Sam probably threw away our phone. It’s because I have had the pleasure of life away from Children’s Hospital for months and months now, and I almost forgot that we--all three of us--are patients there who are are lucky enough to get extended vacations into the real world. I almost forgot.
But the mother ship, through daily phone calls and detailed instructional letters on when Sam needs to start fasting, when we check in, and what we need to bring, is calling us home. It’s time to pack. It's time to go back. Most importantly, it’s time to reestablish our lifeline to the outside world.
So, if you are still listening, please stay tuned, and we will keep you updated on Sam’s progress tomorrow as he undergoes his second heart catheterization. We’re hoping they can open up his tiny left pulmonary artery. We’re hoping his heart function is okay. We’re hoping like crazy that he’s a good candidate for the third major open heart surgery (the Fontan), because it’s his best shot at a life. Mostly, we’re hoping that each time the doctor comes out to update us in the 3rd floor waiting room, where we do crosswords and hold our breath for five hours, that she gives us good news about the fate of our beautiful little singing, dancing, kiss-blowing phone thief.
N.B. If you're still wondering about the fate of the missing phone, by the way, I have some breaking news. Yesterday, when I slipped my right foot into my favorite gray boots, my toes hit something hard. Quickly pulling out, I was surprised to find that inner cave of my boot was glowing electric green. And there, of course, was the long-lost, left-for-dead phone, still holding onto the last of its battery charge.
Jason and I weren’t the only ones excited to find the phone. A few hours after putting the phone back on its charger, I walked into the living room to find Sam happily reunited with it. With a glowing face and heavy breaths, he kept punching in different combinations of numbers, then pausing to hear the outcome, like he was trying to open up some kind of connection to a world he knew was listening.
Footnote: Sorry for the lack of recent pictures. Sam seems to have the same predilection for the camera as he has for the phone, so it's nearly impossible to snap a photo before he grabs the lens. Most of my pictures come out like this:
Friday, May 11, 2012
A Few Glimpses into the Life of Sam the Toddler
March 17, 2012, 10:00 am
My legs are barely propping me up after my first 12 mile run, and Jason has
spent the last two hours drifting back and forth between the living room and the kitchen, cleaning up last night’s party mess. I turn over the cake stand and watch Sam’s leftover banana/Gerber puff
cake fall like a brick into the kitchen trash. I thought the cake was pretty tasty, but Sam was
suspicious of eating anything twice the size of his head, even if was made from
scratch and in the shape of a heart.
As Jason and I chat about our mornings, Jason loading the dishwasher while I
Clorox the counters, we arrive at the horrifying conclusion that we BOTH gave Sam his four medications this
morning, which means that Sam has been double-dosed. Panicked, I drop the Clorox wipe and run up to Sam’s room, fully
expecting to find him lying in a coma.
Instead, I burst into his room to find him sitting up in his
crib, happily chewing on Wubbie. He lets
out an ecstatic screech when he sees me.
As he gives me one of his huge, open-mouth smiles, I realize that I have
holding my breath for the past two minutes.
I bring Sam downstairs to play while Jason and I make frantic
phone calls, trying to figure how damaging our mistake actually was. We are bad parents, I decide. Only bad parents have to call places like Poison Control. On the floor next next to me, surrounded
by new toys, books, and clothes, Sam only has eyes for one present: A
heavyweight boxing champion belt. It’s
gold and shiny, and, judging by the way Sam is lovingly licking it, it is also
delicious.
In the meantime, Poison
Control and the cardiology department at Children’s reassure us that Sam will
be fine. Even with an extra dose, his medications are still "within safe parameters." Jason and I turn our frenetic energy back to cleaning
since we need to pull the house together before Sam’s occupational therapist
gets here in ten minutes.
Although the wrapping paper and boxes have been cleared out, tangerine and lime colored balloons with white “# 1’s” are
still hovering everywhere. We decide it’s
time to set them free because our little townhouse is crowded enough as it is. After leading
the bobbing balloons outside, we count to three and let them go. They drift up swiftly and drunkenly above the
trees, above everything, until they are just tangerine and lime bubbles in a big
blue sky.
“Where do you think
they’ll come down?” I ask Jason, quietly hoping they never will.
April 27, 2012, 9:45 am
As we wait for the neurologist, Sam and I walk around the
halls, touching pictures and peering into empty offices. The outpatient halls of Children’s Hospital
are quiet and still. Unlike the inpatient halls, there’s no beeping, no
crying, no rushing. Just the sound of
someone lightly pecking at a keyboard in the office down the hall and the buffered
hum of construction outside the window.
Sam had an EEG a week ago, and we’re waiting for the
results. A year ago at this time, I
looked over at Sam in his baby swing to discover his hand ticking
uncontrollably. The rest is a dark blur:
endocarditis, a “vegetation” going to his brain and causing a stroke, an early
and risky Glenn surgery, a missing vegetation and the likelihood of half of Sam’s
brain being destroyed. And then, a long
road to recovery.
The neurologist comes in with a smile and sits down. Here are the results she shares:
Sam’s EEG from LAST YEAR (5/19/11):
“…moderately abnormal…due to the following findings: (1) 6
clonic seizures that emanate from the right central region. (2) Frequent
positive and negative sharp occurring in multiple locations. (3) Dysmaturity.
(4) Rhythmic theta. This EEG indicates significant cerebral dysfunction and
dysmaturity. This is predominantly found
in the right hemisphere where there are spikes, sharp waves, and 6 clonic
seizures with focus in the right central region. This likely results from deep white and gray
matter lesions. The results may indicate
a lesion that is somewhat more extensive than that seen on the MRI.”
Sam’s EEG from last week:
“This is a normal EEG during awake and asleep.”
After testing Sam’s reflexes, tone, and strength, the doctor
confirms that Sam appears to be normal and recommends tapering him off anti-seizure meds. Also, she thinks Sam
is left-handed, which pleases me since I, too, am left-handed and secretly love
all left-handed people. She pats Sam on
the head, shakes my hand, and says goodbye.
No follow-up needed.
As we walk out the main entrance, I glance over to the
inpatient side of Children’s Hospital, feeling a familiar lump in my throat. I always have the strange urge to hang out in
the waiting area, or to grab lunch from the hospital cafeteria. It feels unnatural and selfish to leave—the same
way I feel when I drive past homeless people in my nice car—but I navigate Sam’s stroller around the legion in
my brain, out the thick sliding doors, and into a windy, sunny day.
May 7, 2012, 6:00 pm
Sam and I are having a dance off to J.Lo’s “On the Floor”
when I hear the garage door open. I decide to call the dance-off a tie.
When Jason comes in, I can’t wait to tell him the news: Sam
has said his first word (aside from “Dada” and “Mama.”) Jason looks skeptical. He often thinks that I make things up to make
Sam look good.
In the meantime, Sam is inflicting his daily torture upon
Roxy, our cat. I’m not sure why she
takes it, but she just sits there in his play space, letting him grab her tail
and pile Uno cards and legos on top of her.
If he tries to grab her whiskers, she’ll grudgingly half stand up and
move about six inches away, where he will happily pick up the chase, bear crawling
to her to start the hair pulling and toy piling all over again.
The way he crawls reminds me of baby sea turtles trying to
make it to the water: Breathlessly, forcefully, he propels his body across our
sand-colored carpet with some innate, magnetic sense of destination…the cat? The
recycling bin? His box of legos? It’s
hard for me to tell where he’s headed, but when he gets there, it’s clear by
the way he gleefully grabs the cat’s leg, rolls the empty Diet Sierra Mist can,
or flings his legos, that he felt confident about where he was going all along.
Today, as Jason joins us on the floor, Sam is pressing both
of his chubby hands into Roxy’s back. His babbling grows quiet for a moment,
and he says, “Ca.” He can’t quite get
the “t” sound at the end, but he is clearly saying “Ca” repeatedly as he kneads
Roxy, who looks annoyed and unimpressed.
Jason looks at me in disbelief. “He’s actually saying it, isn’t he?” I nod. He's been saying it all day. It’s unbelievable. It turns out
this kid knows English. This whole time,
he’s been faking us out with his baby babble when he somehow figured out what a
cat was.
Later that evening, he casually says “Bye” to his Fisher
Price piano. When I put him to bed that
night, I wonder if I will come in the next morning and find him scribbling long
division on the wall, like a baby Matt Damon in Good Will Hunting.
A few days later, Sam is admiring his reflection in the
mirror while I’m wondering where my baby went and who exactly this little boy
is.
Sam flashes himself a coy smile and says, "hi."
Sam flashes himself a coy smile and says, "hi."
Monday, January 23, 2012
Sam's First Online Date (They Grow Up So Fast!)
Since it has been a little while since our last update, here is a list of the other mini updates from December and January:
1. Sam has “graduated” to going to the cardiologist every three months (remember when he had to go every week?). We don’t have to go back until he turns one in March!
2. Sam thoroughly enjoyed his first Christmas. What did he like the most? The wrapping paper would have to come in first, but he also liked all the attention from his family.
3. Sam loves reading, meaning that he loves turning pages and chewing on books. One of his favorites was a gift from his nephews: The Little Engine That Could. When they gave him the book on Christmas morning, they explained that Sam IS the little engine that could. We couldn’t agree more! Here he is reading it with his “Auntie Smith” and his buddy Adam.
4. Sam apparently made the New Year’s resolution to be g-tube free in 2012 because he pulled out his entire g-tube at a New Year’s Eve party! To make a long story short, we had the pleasure of putting it back in because the paramedics said that we had more experience with it than they did, then we took an ambulance ride to the nearest Children’s Hospital branch, where they checked to make sure the g-tube was in the right place before sending us on our merry way. We decided to go back to the party since we hadn’t had dessert yet, and it was chocolate fondue. Sam gulped down a bottle, slept like…well, like a baby, and then was back to his normal, happy self the next day.
5. Last weekend, Sam got to meet some of his out-of-town “aunties” (my best friends from college), and he got to see his “Auntie Karen” (best friend from high school) who hadn’t seen him since he was a post-Glenn-surgery three-month-old. As mentioned at the beginning of this email, Sam had his first online date with one of my friends’ daughters, and he also enjoyed having a circle of admiring women the entire weekend. While his newfound stranger anxiety prevented any of them from actually holding him, he was pleased to flirt with them from a safe distance.
As you can see, Sam has clearly made his goal of 2012 to garner plenty of female attention. So far, mission accomplished, and we're quite grateful for all of the love. :)
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