Josie
4th Grade
9 years old
Wants to work at PetSmart
Gabe
1st Grade
6 years old
Wants to be a police officer
Showing posts with label Gabe. Show all posts
Showing posts with label Gabe. Show all posts
8.26.2016
10.22.2015
Cardiologist Update
It's been two months since we took Gabe off his Carvedilol.
Warning: Extremely Basic Explanation of why Gabe was on this medication:
When the heart pumps, it squeezes all the way and pushes all the blood out. Gabe's was only strong enough to squeeze a little bit and couldn't get all the blood out so it pumped double (more like triple) time to get enough blood out to keep his body going. This was a smart solution for his little body, but would end up wearing the heart muscle out very quickly as he grew, thus landing him on the transplant list.
He had been on this medication for a couple of years.
Some of you may remember that back in 2012, we were told Gabe wasn't a candidate for the Fontan surgery and would have to go on the transplant list for any chance of survival. Then the doctor decided to try this medication and, while we aren't sure if it was the medication or just his heart getting stronger, he became a candidate for the surgery and the rest is history.
Since the Fontan surgery, he's done awesome.
Like for real. You would never ever know he has half a heart if you didn't know. His new cardiologist is blown away every time we see him. Which is why we have been slowly weaning him off medications. Many of these pills may very well have been needed pre-surgery. But post-surgery, we want him on as little as possible. Many of these medications he will need in the future. So getting him off of them now if he doesn't need them will reduce the risk of him having a tolerance for them later when he actually does need them.
We've reduced 3 so far with no issues.
But this last one has felt different.
It's tricky because, for a HLHS kid, Gabe is a beast.
T-ball, biking, running, not needing any resting. He does more then he really should be able to. But to us, the ones who know him best and see him everyday, he's just off the past couple of weeks.
His teacher says he says he has a headache a lot and he needs to lay down quite a bit at school. We went on a normal bike ride last week and he struggled bad. He's grouchier than normal and super tired by the end of the day.
All of which could be explained by starting kindergarten, a Summer of not being very active outside, and a few strings of later than usual nights.
Or it could be his heart telling us he's headed for trouble.
So we headed in to the cardiologist yesterday to see what was going on in there.
Since it was a somewhat emergency, we weren't able to see his usual cardiologist. I was kind of glad because I wanted a second opinion in taking him off the meds.
The appointment went great.
His ECHO was showing strong heart function and all of his pressures are still awesome. The doctor thinks that what we are seeing is just what it looks like for an HLHS-er to be growing. He recommended just going with his lead and allowing rest when needed.
And like a real son of a gun, this past few days he has been back to his usual wonderfully active self. He even got an exceptional behavior certificate yesterday at school. His teacher said he was like a different kid. So here's to hoping he keeps this up!
Warning: Extremely Basic Explanation of why Gabe was on this medication:
When the heart pumps, it squeezes all the way and pushes all the blood out. Gabe's was only strong enough to squeeze a little bit and couldn't get all the blood out so it pumped double (more like triple) time to get enough blood out to keep his body going. This was a smart solution for his little body, but would end up wearing the heart muscle out very quickly as he grew, thus landing him on the transplant list.
He had been on this medication for a couple of years.
Some of you may remember that back in 2012, we were told Gabe wasn't a candidate for the Fontan surgery and would have to go on the transplant list for any chance of survival. Then the doctor decided to try this medication and, while we aren't sure if it was the medication or just his heart getting stronger, he became a candidate for the surgery and the rest is history.
Since the Fontan surgery, he's done awesome.
Like for real. You would never ever know he has half a heart if you didn't know. His new cardiologist is blown away every time we see him. Which is why we have been slowly weaning him off medications. Many of these pills may very well have been needed pre-surgery. But post-surgery, we want him on as little as possible. Many of these medications he will need in the future. So getting him off of them now if he doesn't need them will reduce the risk of him having a tolerance for them later when he actually does need them.
We've reduced 3 so far with no issues.
But this last one has felt different.
I got booted from the bedside seat. Big Sister was his hand holder of choice.
It's tricky because, for a HLHS kid, Gabe is a beast.
T-ball, biking, running, not needing any resting. He does more then he really should be able to. But to us, the ones who know him best and see him everyday, he's just off the past couple of weeks.
His teacher says he says he has a headache a lot and he needs to lay down quite a bit at school. We went on a normal bike ride last week and he struggled bad. He's grouchier than normal and super tired by the end of the day.
All of which could be explained by starting kindergarten, a Summer of not being very active outside, and a few strings of later than usual nights.
Or it could be his heart telling us he's headed for trouble.
So we headed in to the cardiologist yesterday to see what was going on in there.
Since it was a somewhat emergency, we weren't able to see his usual cardiologist. I was kind of glad because I wanted a second opinion in taking him off the meds.
The appointment went great.
His ECHO was showing strong heart function and all of his pressures are still awesome. The doctor thinks that what we are seeing is just what it looks like for an HLHS-er to be growing. He recommended just going with his lead and allowing rest when needed.
And like a real son of a gun, this past few days he has been back to his usual wonderfully active self. He even got an exceptional behavior certificate yesterday at school. His teacher said he was like a different kid. So here's to hoping he keeps this up!
8.21.2015
To Live Like Aaron
Yesterday Gabe had his best cardiologist appointment to date.
I expected nothing less since the child is honest to goodness going at full speed from the time he wakes up (at 6:15 every. single. day.) to the time his little curls hit the pillow. He runs and bikes and swims for hours on end and even when I convince him that watching a little TV would do him (e.i. me) some good, he still fidgets and wiggles and drums on everything in reach.
His ECHO results were fabulous and all his numbers were exactly where they needed to be. His doctor, that I love, thinks that he's ready to come off another medication. Music to my ears.
The doctor was so positive about it all, that I mustered up enough bravery to ask a question I haven't been ready to ask - What exactly does Gabe's future look like?
I know that he didn't want to answer me.
We'd just had this great, uplifting conversation and now I was asking for him to pop the bubble, give me a dose of reality.
He sighed and gave me the rundown:
The Fontan will work wonders through his teens. We'll barely notice a difference between him and other kids. He can't play Varsity sports, which will be a huge bummer to my sport loving boy, but he'll be alive so it's a fair trade.
In his 20's, we'll notice him slowing down, but with rest and medication modifications, he will be alive so again, a fair trade.
The 30's are when Gabe's outcome starts looking bleak.
Survival past 40, unlikely.
40.
Just a few years longer than my brother walked this Earth.
And as the doctor kept talking, about medical advances and stem cells and how long 35 years is in medical terms, I couldn't get that number out of my head.
I sent up a fervent prayer: "Please God let him blow that number out of the water."
But the prayer I offered up on the heels of those words is the true prayer of my heart. And not just for Gabe, whose future is unclear, but for Josie and Andrew and myself and everyone that I love: "Let him live like Aaron."
Let him be cool without flaunting it.
Let him be accepting of all people, an instant friend to many.
Let him hold those he loves the closest.
Let him be funny and let his shoulders shake when he laughs.
Let him drive his beat up car across the country to go to concerts and ride the country's highest roller coasters and name weekend parties after himself. Let him be brave enough to do all those things that I never did.
Let him find a love story that will inspire everyone that hears it.
Let him be funny and a bit sarcastic without being biting.
Let him find his art and his voice and, when the day comes that we know the end is near, let him decide to not go gently. Let him decide he will live, and live well, every damn minute he gets.
Let him live like my big brother.
Let him be my hero, my inspiration.
Today I'm boarding a plane to fly up to Minnesota.
We are going to carry out Aaron's request to lay his ashes in the river where we grew up playing.
This weekend will be a different kind of hard. My emotional stuntedness had me numb at his funeral. More concerned about how everyone else was feeling than about my own heart breaking under my ribs.
But now, 9 months after he died, I feel it everyday.
There aren't many songs I can listen to that don't make me think of him, mostly because I know he'd hate them. I hold my breath when it hurts and have to remind myself to exhale. That it's OK.
I'm glad that I got to look up to Aaron for 32 years. That he led the way. I miss him every second.
And I want to live like him.
I expected nothing less since the child is honest to goodness going at full speed from the time he wakes up (at 6:15 every. single. day.) to the time his little curls hit the pillow. He runs and bikes and swims for hours on end and even when I convince him that watching a little TV would do him (e.i. me) some good, he still fidgets and wiggles and drums on everything in reach.
His ECHO results were fabulous and all his numbers were exactly where they needed to be. His doctor, that I love, thinks that he's ready to come off another medication. Music to my ears.
The doctor was so positive about it all, that I mustered up enough bravery to ask a question I haven't been ready to ask - What exactly does Gabe's future look like?
I know that he didn't want to answer me.
We'd just had this great, uplifting conversation and now I was asking for him to pop the bubble, give me a dose of reality.
He sighed and gave me the rundown:
The Fontan will work wonders through his teens. We'll barely notice a difference between him and other kids. He can't play Varsity sports, which will be a huge bummer to my sport loving boy, but he'll be alive so it's a fair trade.
In his 20's, we'll notice him slowing down, but with rest and medication modifications, he will be alive so again, a fair trade.
The 30's are when Gabe's outcome starts looking bleak.
Survival past 40, unlikely.
40.
Just a few years longer than my brother walked this Earth.
And as the doctor kept talking, about medical advances and stem cells and how long 35 years is in medical terms, I couldn't get that number out of my head.
I sent up a fervent prayer: "Please God let him blow that number out of the water."
But the prayer I offered up on the heels of those words is the true prayer of my heart. And not just for Gabe, whose future is unclear, but for Josie and Andrew and myself and everyone that I love: "Let him live like Aaron."
Let him be cool without flaunting it.
Let him be accepting of all people, an instant friend to many.
Let him hold those he loves the closest.
Let him be funny and let his shoulders shake when he laughs.
Let him drive his beat up car across the country to go to concerts and ride the country's highest roller coasters and name weekend parties after himself. Let him be brave enough to do all those things that I never did.
Let him find a love story that will inspire everyone that hears it.
Let him be funny and a bit sarcastic without being biting.
Let him find his art and his voice and, when the day comes that we know the end is near, let him decide to not go gently. Let him decide he will live, and live well, every damn minute he gets.
Let him live like my big brother.
Let him be my hero, my inspiration.
Today I'm boarding a plane to fly up to Minnesota.
We are going to carry out Aaron's request to lay his ashes in the river where we grew up playing.
This weekend will be a different kind of hard. My emotional stuntedness had me numb at his funeral. More concerned about how everyone else was feeling than about my own heart breaking under my ribs.
But now, 9 months after he died, I feel it everyday.
There aren't many songs I can listen to that don't make me think of him, mostly because I know he'd hate them. I hold my breath when it hurts and have to remind myself to exhale. That it's OK.
I'm glad that I got to look up to Aaron for 32 years. That he led the way. I miss him every second.
And I want to live like him.
8.10.2015
First Day of School
It's here!
Third Grade:
And Kindergarten:
Our first real First Day of School.
It was adorable and nerve wracking and I cannot wait to go get them and hear all about their days!
And my favorite part: Last August to This August
Third Grade:
And Kindergarten:
Our first real First Day of School.
It was adorable and nerve wracking and I cannot wait to go get them and hear all about their days!
And my favorite part: Last August to This August
6.25.2015
Redemptions
I didn't pick a word for 2015.
When January rolled around, I was still reeling.
From my brother dying. From my marriage nearly falling apart. From lost friendships and loneliness and the unfairness of it all.
Had I picked a word on January 1st, it wouldn't have been an accurate depiction of what was to come in the next year.
I had no idea.
That grief is like a rolling tide.
That I'd feel Aaron in every breath I take and that missing him and loving him and being his little sister, well, those things never end.
That marriages can start again.
That you can wipe away the things of the past and move forward. That continuing on isn't settling or giving in or resigning to mediocrity, but courageous and life giving and, holy cow, it's real love.
I still miss my friends and have realized that that part is just going to take more time.
We are nearly 7 months into 2015 and I have my word now.
Redemption.
And really, I think it'll just be my life word.
Because when I see where I am, when I look over at Andrew, when I see Josie becoming a lady, when I see Gabe's whole face light up with that big grin, it really is the only thing that comes to mind.
We have been redeemed.
Saved from error.
Each of us on our own and all of us together.
It's the story of our family.
And 5 years ago today, Gabe's redemption story crossed with the rest of ours and, man, I'm so glad it did.
This past week, as Andrew and I celebrated our anniversary on the beach, I couldn't help but go back to the day we got the call about Gabe. We were doing the same thing, celebrating our anniversary at the beach. With Josie and David and Amber and Olivia.
We were having the best week and I didn't want to leave. I wanted to stay and be comfortable and stick to the original plan. Which is very reflective of how I lived most of my life.
And then:
Gabe.
Well, Javon, then Von, then Baby V, then Gabriel, then Gabe.
Andrew has made quite a few rash decisions that didn't turn out well, but this one? Telling me I was nuts and throwing all of our stuff in an expensive rental car and driving 8 hours through the night with our tired 3 year old to get back to Georgia and go pick up the boy that would become our son?
Well, he got that one right.
I remember the way he smelled that night. His grey skin and seeing his scars for the first time. I remember those deep eyes and fat wrists and, even if it took me awhile to let my guard down, falling in love.
Gabe. The one I didn't see coming.
Redeemed.
When January rolled around, I was still reeling.
From my brother dying. From my marriage nearly falling apart. From lost friendships and loneliness and the unfairness of it all.
Had I picked a word on January 1st, it wouldn't have been an accurate depiction of what was to come in the next year.
I had no idea.
That grief is like a rolling tide.
That I'd feel Aaron in every breath I take and that missing him and loving him and being his little sister, well, those things never end.
That marriages can start again.
That you can wipe away the things of the past and move forward. That continuing on isn't settling or giving in or resigning to mediocrity, but courageous and life giving and, holy cow, it's real love.
I still miss my friends and have realized that that part is just going to take more time.
We are nearly 7 months into 2015 and I have my word now.
Redemption.
And really, I think it'll just be my life word.
Because when I see where I am, when I look over at Andrew, when I see Josie becoming a lady, when I see Gabe's whole face light up with that big grin, it really is the only thing that comes to mind.
We have been redeemed.
Saved from error.
Each of us on our own and all of us together.
It's the story of our family.
And 5 years ago today, Gabe's redemption story crossed with the rest of ours and, man, I'm so glad it did.
This past week, as Andrew and I celebrated our anniversary on the beach, I couldn't help but go back to the day we got the call about Gabe. We were doing the same thing, celebrating our anniversary at the beach. With Josie and David and Amber and Olivia.
We were having the best week and I didn't want to leave. I wanted to stay and be comfortable and stick to the original plan. Which is very reflective of how I lived most of my life.
And then:
Gabe.
Well, Javon, then Von, then Baby V, then Gabriel, then Gabe.
Andrew has made quite a few rash decisions that didn't turn out well, but this one? Telling me I was nuts and throwing all of our stuff in an expensive rental car and driving 8 hours through the night with our tired 3 year old to get back to Georgia and go pick up the boy that would become our son?
Well, he got that one right.
I remember the way he smelled that night. His grey skin and seeing his scars for the first time. I remember those deep eyes and fat wrists and, even if it took me awhile to let my guard down, falling in love.
Gabe. The one I didn't see coming.
Redeemed.
Happy Gotcha Day Sweet Gabriel Gordon.
the rolls! i can't deal.
3.29.2015
Doing His Thing
Gabe is a Sports Guy.
Which is a little baffling to Andrew and I since, well, we barely know a tennis ball from a football.
Ever since he could grip a ball, the child has been throwing things. If you come visit us, within 36 seconds, Gabe will ask you to play some sort of catch/throw/run game. His hand eye coordination is pretty impressive and he can throw the ball hard and fast with 96.3% accuracy.
It's so fun to watch him out on the field doing his thing.
And wouldn't ya know, I'm pretty quickly becoming a Sports Mom.
Which is a little baffling to Andrew and I since, well, we barely know a tennis ball from a football.
Ever since he could grip a ball, the child has been throwing things. If you come visit us, within 36 seconds, Gabe will ask you to play some sort of catch/throw/run game. His hand eye coordination is pretty impressive and he can throw the ball hard and fast with 96.3% accuracy.
It's so fun to watch him out on the field doing his thing.
And wouldn't ya know, I'm pretty quickly becoming a Sports Mom.
the tongue. i can't deal.
3.23.2015
His Little Ticker
It's been a year since Gabe's surgery.
I can't decide if that feels like yesterday or an eternity ago.
Maybe that's just how it is with things that monumental.
I look at him today; running, playing, talking all the words. The boy honestly never, ever is still until he goes to sleep at night, where he falls asleep fast and hard and wakes up ready to tackle the new day. It's unbelievable to think that he only has half of a heart. One ventricle doing all the pumping and oxygenating for that busy body.
We are under routine maintenance care now.
Going to see the cardiologist every three months for now with hopes of cutting back even more in the near future. Last week we had one of those visits.
Finding a cardiologist out here has been trickier than I expected.
We found one when we first got to Arizona that was good, but we ended up switching insurance and that doctor wasn't on the new plan. We ended up not really knowing who to go to, but after some hunting, we found a doctor just in time for his second Arizona appointment.
Obviously, Gabe's case is complicated. We want a great cardiologist that we can stick with until he ages out of pediatric care. His new doctor walked in and just had the Grandparent-esque feel to him. Gabe loved him, I loved him. And bonus, he wants to immediately start working towards getting Gabe off these diuretics.
umm, when did my daughter get so big?!?
Nothing new to report.
We go back in May just to assess how he is doing coming off the meds. So glad to be in the part of this where we aren't waiting for a shoe to drop at all.
3.14.2015
1st Fontan-versary
One year.
One magical, adventure filled, strong hearted year.
One year of red lips and pink nail beds. Of O2 stats at 99.
Gabe runs and plays hard. We've come to expect the look of disbelief when people see his scar poke out of his shirt and we tell them what it's from.
Sometimes I look at him and think, "Good Lord kid. you only have half your heart!"
How are you alive? How are you hugging me and talking to me in that little munchkin voice? How do I get to keep you?
I remember this moment.
The first time we saw him after doctors cut his chest and broke through his breast plate. When his eyes were so puffy he couldn't see and blood flowed through the tubes.
I remember his screaming in terror from the morphine induced nightmares and not being able to hold him. I remember telling him he couldn't have a drink as he begged for water. I remember hours that turned into days and honestly not having a clue if the sun was up or what day it was or when any of us ate last.
And then I remember watching my baby boy recover.
Beat every odd I had placed on us. He'll never walk that soon. He can't play or talk or eat.
But he did.
So fast.
And even though it wasn't an ideal recovery and he hit setbacks and, God, was it scary, he did it.
Gabe did it.
I'll never forget the way those two weeks in the cardiac unit felt.
Every up and down. The desperation to be home and never wanting to not have nurses there to help. The frustration and anger and hope and peace.
I'll never forget watching Gabe come back to life.
Gabe's life was saved one year ago today.
And that's a day worth celebrating.
if you're a hlhs mom or know one, i'd absolutely love to connect with you. these kids are amazing.
One magical, adventure filled, strong hearted year.
One year of red lips and pink nail beds. Of O2 stats at 99.
Gabe runs and plays hard. We've come to expect the look of disbelief when people see his scar poke out of his shirt and we tell them what it's from.
Sometimes I look at him and think, "Good Lord kid. you only have half your heart!"
How are you alive? How are you hugging me and talking to me in that little munchkin voice? How do I get to keep you?
I remember this moment.
The first time we saw him after doctors cut his chest and broke through his breast plate. When his eyes were so puffy he couldn't see and blood flowed through the tubes.
I remember his screaming in terror from the morphine induced nightmares and not being able to hold him. I remember telling him he couldn't have a drink as he begged for water. I remember hours that turned into days and honestly not having a clue if the sun was up or what day it was or when any of us ate last.
And then I remember watching my baby boy recover.
Beat every odd I had placed on us. He'll never walk that soon. He can't play or talk or eat.
But he did.
So fast.
And even though it wasn't an ideal recovery and he hit setbacks and, God, was it scary, he did it.
Gabe did it.
I'll never forget the way those two weeks in the cardiac unit felt.
Every up and down. The desperation to be home and never wanting to not have nurses there to help. The frustration and anger and hope and peace.
I'll never forget watching Gabe come back to life.
Gabe's life was saved one year ago today.
And that's a day worth celebrating.
if you're a hlhs mom or know one, i'd absolutely love to connect with you. these kids are amazing.
2.20.2015
They Won't Starve
I honestly have no clue. A three day weekend involving an ER visit and subsequent 24 hour stay at the hospital has me all discombobulated (spelled that right on the first try!).
After keeping Gabe for 24 hours to monitor his blood sugars we were sent home with no answers.
We do know that by the time we got him to the hospital he was, in fact, in a full diabetic coma.
While nurses struggled to get an IV in his nonexistent veins, he went from freezing cold to dripping sweat. They poked him at least 30 times trying to get a line in while he laid there, not flinching or crying at all, before a NICU nurse suggested getting a glucose reading from his toe.
The sample didn't even register.
His little body literally was out of sugars to function. This explains the unblinking stares, hallucinations, and limp body. They rushed to get him orange juice and a Popsicle while my stepdad ran to get him his favorite, McDonalds.
It was amazing to watch his little body come back to life almost instantly.
Not fully, but he blinked then started to move his little hands and the more he drank and ate the more he was able to sit up. They gave him glucose water (a lot) which then sent his numbers up to 350, way to high. The doctors wanted to observe him to be sure he could regulate them back to normal and run more tests to try to find out what caused the sudden drop.
He spent the rest of the day and night seeing things that weren't there and not making much sense verbally. He had a hard time with hand eye coordination and walking was difficult. All so hard to watch, but they said was normal for sugars that low then that high.
He woke up Monday morning fully himself.
Just as fast as he had faded out in his sleep the night before, he came back. Hungry, busy, talking all the words.
All tests came back normal. His white blood count was elevated, but again that is a normal response to that stressful of a situation. He never got a fever or got sick in any other way.
We spent the day playing and watching movies until they discharged us that afternoon.
The only explanation they gave was that he just didn't eat enough food the days leading up to the episode.
Which is true, he hadn't been eating more than a couple bites at a meal for days. I had chalked it up to preschooler picky eating. I've always been in the camp of "it's fine to not eat, but you won't eat again until the next meal."
They won't starve themselves, right?
True, but their bodies may run out of sugars and send them into a diabetic coma while they sleep.
The doctor said this isn't unheard of. It happens in kids under 5.
I still think it's strange that he was so normal (ei: ultra active) right up to bedtime the night before and crashed overnight. Andrew and I kept checking on him Monday night and laughing because, guess what, sleeping looks a whole lot like coma! Not sure what exactly we were looking to see.
Either way, Gabe is back to his happy, active self.
He even got another one of my famous haircuts where I basically butcher the boys luscious curls. Sorry buddy.
Life goes on. Preschool starts Monday.
Thanks for the prayers.
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