Last week we handed Jackson over and let them shove cameras down his throat, and a drill up his nose, all in an effort to gain some knowledge that would help him. Information the doctors could use to fix his troubles. Wisdom to understand why he throws up every morning. Pieces to the puzzle of why, 10 months post Glenn, he's still on oxygen. And what did we gain? We gained a vest that will shake our child. Wow. Seriously?!?!? I'm in a bit of a fowl mood about last week.
I'm an envious green headed monster. I have heart momma's with heart kids running circles around Jackson. They aren't on oxygen and their sats stay in the 80's. They are having their feeding tubes pulled. They are up and moving. Well meaning friends who ask if Jackson is walking yet are like a knife to my back. Their genuine questions sting like a thousand bees. I am tired and frustrated and burnt out and scared.
Adel wants to have a cath this spring.
I can sense another "big picture" talk coming. And now that Chris is back to work, I will likely face that conversation by myself. Fuck.
Jackson isn't a "thriving" Glenn, and deep down we all know it. Adel has been patient. We've all been patient. But at what point do we start asking those uncomfortable questions? I have searched for a post Fontan CHARGE kid. And I haven't found one. I've found a few CHARGE kids who made it through their Glenn, but aren't Fontan candidates. They are 4 and 5 and 6 years old, and are just sorta struggling to hold their own, much like Jackson.
It makes me wonder if the other CHARGE kids got heart (and maybe also lung) transplants? Adel has said that we might fight an up hill battle to get Jackson on a transplant list. And while I can understand that, is it fair to refuse to him a heart just because he's not in tip top shape? And please don't mis-understand me, I am not ready to give up on Jackson's heart and jump on the transplant band wagon just yet. Transplants are scary and come with their own list of issues and meds and worries. They aren't perfect. You trade one set of life long problems for another. But, I don't like the idea of it being outside his reach either.
What I do know is that pre Glenn, when his half a heart was doing a whole heart's job, he wasn't on diuretics. He wasn't on inhalers. He wasn't on heart meds. Yes was tired and he slept a lot. He was blue. His oxygen levels weren't fantastic, but he wasn't attached to an oxygen concentrator 24/7.
What I also know is that post Glenn, he's happier. He's more interactive. He lights up when Mason walks into the room. He has fight and spunk and spirit in him.
Do we have enough forward progress to keep going? Are we just torturing him (and us) by prolonging the inevitable - whatever that may be?
The doctors told us that being a single ventricle patient was a hard road. Add in his CHARGE and there are days it seems too daunting of a task to give to a sweet 16 month old boy. My heart aches for him. It aches with worry and fear that we're making the wrong choices. It aches from sleepless nights spent with feeding tubes. It aches from grief over the healthy son we were supposed to have. It aches with envy. It aches from feeling alone on this journey. It aches from frustration that I have no control, no say, no magic wand. It just plain aches.
Tuesday, February 25, 2014
Monday, January 20, 2014
Organ Donation
It's been a little rough in my on line world lately. Connor, a sweet CHARGE boy, just a few weeks older than Jackson, passed away quite suddenly. His momma posted a video of him on Saturday night, after a bath, smiling and brushing his hair, not a single care in the world. Sunday he was in the ER fighting for his life. He underwent surgery twice, but the damage to his organs was too great and the doctors were unable to save him. Connor gained his angel wings just a few short days later, while snuggled in his mom's arms.
When I let my mind drift off, the thoughts that come darting in and out are just awful. I ponder how you equally divide the time when your child is dying, between yourself and your spouse, so that each of you gets their share in those last few minutes. I wonder what Mason would say or do at Jackson's funeral. Would he be trying to make Jackson laugh and smile the way he does at home? Would he understand that Jackson's wasn't just sleeping, but rather that he was gone, forever? And then I get angry with myself for even allowing my mind to think such things. Especially when life at home has settled into a normal that almost has a sense of calm and comfort to it. But all around me are children, and their parents and families, who are suffering.
A three year old girl was playing last week, and sustained an injury. She was life flighted to Children's hospital, and operated on. She coded multiple times in the ER, the helicopter, and the OR. Her brain was robbed of oxygen rich blood for too long. Her body was placed on ECMO. But the MRI of her brain showed there was just too much damage, and her parents made the brave decision to remove her from life support. They also gave the ultimate gift of organ donation. In their deepest moment of sorrow and pain, they gave the gift of life to other children. I struggled to sleep Saturday night after hearing of Elise's passing. I found my brain in over drive.
I have done up Wills and Trusts and that good junk for Chris and I, to take care of the boys. Chris has always been an organ donor. I have always not. There is just something about it that just creeps my ass out. But, over coffee on Sunday morning, I told Chris that I had changed my mind. Having Jackson, and being thrown face first into this heart community, had changed it. It still creeps my ass out, but, whatever. I digress. Take what you want if it's going to help another person. If you haven't made the decision to be an organ donor, let Elsie's story help you make that choice. Jackson's story is what made mine.
When I let my mind drift off, the thoughts that come darting in and out are just awful. I ponder how you equally divide the time when your child is dying, between yourself and your spouse, so that each of you gets their share in those last few minutes. I wonder what Mason would say or do at Jackson's funeral. Would he be trying to make Jackson laugh and smile the way he does at home? Would he understand that Jackson's wasn't just sleeping, but rather that he was gone, forever? And then I get angry with myself for even allowing my mind to think such things. Especially when life at home has settled into a normal that almost has a sense of calm and comfort to it. But all around me are children, and their parents and families, who are suffering.
A three year old girl was playing last week, and sustained an injury. She was life flighted to Children's hospital, and operated on. She coded multiple times in the ER, the helicopter, and the OR. Her brain was robbed of oxygen rich blood for too long. Her body was placed on ECMO. But the MRI of her brain showed there was just too much damage, and her parents made the brave decision to remove her from life support. They also gave the ultimate gift of organ donation. In their deepest moment of sorrow and pain, they gave the gift of life to other children. I struggled to sleep Saturday night after hearing of Elise's passing. I found my brain in over drive.
I have done up Wills and Trusts and that good junk for Chris and I, to take care of the boys. Chris has always been an organ donor. I have always not. There is just something about it that just creeps my ass out. But, over coffee on Sunday morning, I told Chris that I had changed my mind. Having Jackson, and being thrown face first into this heart community, had changed it. It still creeps my ass out, but, whatever. I digress. Take what you want if it's going to help another person. If you haven't made the decision to be an organ donor, let Elsie's story help you make that choice. Jackson's story is what made mine.
Thursday, January 9, 2014
Matters of the Heart
My friend Katie told me that Jackson was going to be our teacher in matters of the heart. I thought it was cute, but didn't fully understand what she meant by that. But, I am starting to. Having Jackson has introduced me to a world of heart kids, and CHARGE kids. Worlds I never knew existed. Worlds I suppose I never really wanted to know existed. But, now I find myself totally submerged. And whenever one of these kids is sick, or worse, I find myself unable to walk away. I post and ask for prayers. I post facts and details and statistics. I berate my family and friends with requests to wear red in February for Congenital Heart Defects. And when a child passes away, I feel a small chuck of my heart break off. It could just as easily have been Jackson, or even Mason, and that terrifies me. I wake in the middle of the night to check on my kids. I stand over them to make sure I see their chest rise and fall, rise and fall. I place my hand over their mouth until I feel their warm breath on my fingers. And then I crawl back into bed, one ear always listening to their monitors, and I sleep for a few hours and then I get up and do it again.
Having Jackson has given me a voice, to shout from the mountain tops, to anyone and everyone who will listen to me. I educate that 1 in 100 children are born with a Congenital Heart Defect. I inform that twice as many children die of heart defects as all forms of childhood cancer combined. I report that more than half of children born with a Congenital Heart Defect will require at least one massive surgery in their lives. My sweet Jackson has already had two in his short fifteen months here on earth.
And while it is easy to focus on the negative outcomes, and the losses, I also try to celebrate when there is a win. When a child is finally approved for cochlear implant surgery that will enable them to hear for the first time in their lives. When a baby is rolled in for life saving heart surgery, given little chance to survive, and comes out thriving better than anyone hoped or dared to dream. When a child receives a long awaited and precious gift of an organ donation.
I am humbled to have given birth to such a teacher in these matters of the heart. I hope that my stories, good bad or otherwise, have opened your eyes to the world around you. I pray that the lessons you have learned have taught you to hug those you love. Tell them every single day that they mean the world to you. Put away your phones and your tablets when you are gathered around the table for a meal. Play hooky from work, take your kids out of school for the afternoon, and just go run wild at the park, laughing and playing and truly enjoying one another. Time is a precious commodity. Spend it with the people who mean the most to you, being present and appreciative and kind.
Having Jackson has given me a voice, to shout from the mountain tops, to anyone and everyone who will listen to me. I educate that 1 in 100 children are born with a Congenital Heart Defect. I inform that twice as many children die of heart defects as all forms of childhood cancer combined. I report that more than half of children born with a Congenital Heart Defect will require at least one massive surgery in their lives. My sweet Jackson has already had two in his short fifteen months here on earth.
And while it is easy to focus on the negative outcomes, and the losses, I also try to celebrate when there is a win. When a child is finally approved for cochlear implant surgery that will enable them to hear for the first time in their lives. When a baby is rolled in for life saving heart surgery, given little chance to survive, and comes out thriving better than anyone hoped or dared to dream. When a child receives a long awaited and precious gift of an organ donation.
I am humbled to have given birth to such a teacher in these matters of the heart. I hope that my stories, good bad or otherwise, have opened your eyes to the world around you. I pray that the lessons you have learned have taught you to hug those you love. Tell them every single day that they mean the world to you. Put away your phones and your tablets when you are gathered around the table for a meal. Play hooky from work, take your kids out of school for the afternoon, and just go run wild at the park, laughing and playing and truly enjoying one another. Time is a precious commodity. Spend it with the people who mean the most to you, being present and appreciative and kind.
Friday, January 3, 2014
Teased by Higher Oxygen Sats
When we were first diagnosed with Jackson's heart condition, one of our first questions was if we should move to a lower elevation. The doctor said that some kids have a positive effect from lower elevation, and some kids don't. And if we wanted to know about Jackson, we should take him to the beach for a week and see what happened. So, of course, we were anxious to see what a drop of 4,000 feet would do for his sats. The first day, I didn't see much change. But, then they started to climb, and they topped out in the upper 80s. Yes, he was still on 1/2 liter of oxygen. But, we went from 78 up to 87. His color was amazing. He was actually pink, and not dusky and blue. Even his fingers and toes were pink. His "speed bump" was practically gone. And then the plague set in, and his sats dropped back into the upper 70s and low 80s. It's hard to tell if they would have stayed up once he got over the cold. Or, if his body just had a short term reaction to the lower elevation and would have settled back into the 70s and 80s.
I've emailed Adel to talk about what this means, and if we need to consider moving. We have always said that if we moved, we'd move to Portland, Oregon. But their cardiology program ranked #42 on the list. Denver is #12. I am not trading 42 for 12.
So, now we are looking at Cincinnati (#5), or Houston (#3). I can't stand the idea of how hot I'd be in Texas. Simply can not stand it. But, Austin only a two hour drive from Houston. And my bff lives in Austin. And Chris' bff lives in Austin. So, that definitely makes Texas alittle lot more appealing. We'd be leaving our jobs and home and friends behind, so moving someplace where we'd already have great friends would make that pill a little easier to swallow. But, still how do we know if Jackson's sats would come up and stay up, post a move there. Uprooting and relocating our entire family for an unknown is a pretty scary thought.
So, I am waiting for a clinic visit with Adel in a few weeks so I can pick his brain. He's very honest with us, and I trust that if he thought it would help Jackson, he'd be the first one to sign off transferring our care. Jackson is 2 or more years from the Fontan. And I am not sure I'd be willing to move before then. Finding a surgeon we trust is hard, and having to replace Jackson's entire medical team seems quite daunting right now. I've reached out to a few Texas heart momma's and a few Cincinnati heart momma's, and they all seem happy with their care. The Texas heart momma's are a pretty big group. That Texas Medical Center complex is jaw dropping. Over 1,000 acres. Holy shit!
I really don't want to move, and leave Denver behind. And I certainly don't want to do it for nothing. But, seeing how healthy Jackson looked, with amazing color in his face and fingers could be motivation enough to make me pack up and go. We might also see about another family vacation this summer to Austin to check things out, and see how his sats do. And to see if I can make it 2 weeks in Texas in the dead of summer without killing anyone. That might be the bigger challenge! Ha Ha! And of course, typical me, I am totally 100% cart before the horse here, as Adel may say that it isn't worth it.
I've emailed Adel to talk about what this means, and if we need to consider moving. We have always said that if we moved, we'd move to Portland, Oregon. But their cardiology program ranked #42 on the list. Denver is #12. I am not trading 42 for 12.
So, now we are looking at Cincinnati (#5), or Houston (#3). I can't stand the idea of how hot I'd be in Texas. Simply can not stand it. But, Austin only a two hour drive from Houston. And my bff lives in Austin. And Chris' bff lives in Austin. So, that definitely makes Texas a
So, I am waiting for a clinic visit with Adel in a few weeks so I can pick his brain. He's very honest with us, and I trust that if he thought it would help Jackson, he'd be the first one to sign off transferring our care. Jackson is 2 or more years from the Fontan. And I am not sure I'd be willing to move before then. Finding a surgeon we trust is hard, and having to replace Jackson's entire medical team seems quite daunting right now. I've reached out to a few Texas heart momma's and a few Cincinnati heart momma's, and they all seem happy with their care. The Texas heart momma's are a pretty big group. That Texas Medical Center complex is jaw dropping. Over 1,000 acres. Holy shit!
I really don't want to move, and leave Denver behind. And I certainly don't want to do it for nothing. But, seeing how healthy Jackson looked, with amazing color in his face and fingers could be motivation enough to make me pack up and go. We might also see about another family vacation this summer to Austin to check things out, and see how his sats do. And to see if I can make it 2 weeks in Texas in the dead of summer without killing anyone. That might be the bigger challenge! Ha Ha! And of course, typical me, I am totally 100% cart before the horse here, as Adel may say that it isn't worth it.
Wednesday, January 1, 2014
Phoenix, in photos
Tuesday, December 24, 2013
Christmas Eve, from Phoenix
I know you're all dying to hear how the plane ride went. And, I'm proud to say that it went totally fine. Having my children along to deal with and worry about really kept my own anxiety from creeping up. I just didn't have the time or the energy to worry about worrying. Don't get me wrong, I still popped two xanex and had 2 glasses of white wine, but that might have been more out of habit than necessity. We landed without issue, and found our way to our rental car and our rental house. Mason isn't quite sure what to think of all these things we are borrowing. He was awake and standing next to our bed at 5:15 on Friday morning. I think he might have been dressed into clothes, complete with shoes, by 5:20. Silly boy. He didn't think we were staying and was worried about being left behind. It's been a little rough adjusting to the schedules of vacation, but we're doing ok. Having fun, making good memories, and eating some yummy food. I am still hoping for a date night with Chris while we are here. I've yet to eat any mexican food, and damn it, that's just not ok.
Monday night we went to dinner, and the first thing I noticed was the mom at the head of the table, wearing a stethoscope. My eyes darted around the table until they came to rest on her one year old son, with an NG tube in his nose. We sat directly next to them, and I could feel my feet dancing, the excitement jumping from one foot to the other. I could hardly contain myself. Chris could tell I was dying to go say something to them. Trouble was, I really couldn't think of a darned thing to start the conversation with. But then I remembered something that a kind waitress said to me when she asked about Jackson. She said it's so much nicer when people ask questions then when they just stare. So, over I walked and introduced myself. We talked about synergist shots, and NG tubes vs G tubes and how challenging, and yet rewarding, it is to be the mom of a kid with special needs. It felt good, in the pit of my stomach, to reach out and connect. I'm so used to the stares and the pointing and the whispering. It was truly liberating for my soul me to see another mom, out with her child, just trying to have dinner as a family.
Phoenix has been good to us. The weather is nice. Jackson's oxygen sats are up a couple of points, and Mason has really enjoyed spending time with Grandma Donna and Aunt Nelly and everyone else. I am overlooking the pool of our rental house, doors wide open, in the 70 degree weather. It's a nice change of pace, but, it will be hard to convince myself it's Christmas tomorrow morning when there is no snow.
I am feeling blessed and safe and happy as we slip through Christmas Eve and into Christmas Day. My children are home and healthy. My family is together under one roof. What a joy to be able to spend the holidays here in sunny Phoenix.
Merry Christmas everyone!!
Monday night we went to dinner, and the first thing I noticed was the mom at the head of the table, wearing a stethoscope. My eyes darted around the table until they came to rest on her one year old son, with an NG tube in his nose. We sat directly next to them, and I could feel my feet dancing, the excitement jumping from one foot to the other. I could hardly contain myself. Chris could tell I was dying to go say something to them. Trouble was, I really couldn't think of a darned thing to start the conversation with. But then I remembered something that a kind waitress said to me when she asked about Jackson. She said it's so much nicer when people ask questions then when they just stare. So, over I walked and introduced myself. We talked about synergist shots, and NG tubes vs G tubes and how challenging, and yet rewarding, it is to be the mom of a kid with special needs. It felt good, in the pit of my stomach, to reach out and connect. I'm so used to the stares and the pointing and the whispering. It was truly liberating for my soul me to see another mom, out with her child, just trying to have dinner as a family.
Phoenix has been good to us. The weather is nice. Jackson's oxygen sats are up a couple of points, and Mason has really enjoyed spending time with Grandma Donna and Aunt Nelly and everyone else. I am overlooking the pool of our rental house, doors wide open, in the 70 degree weather. It's a nice change of pace, but, it will be hard to convince myself it's Christmas tomorrow morning when there is no snow.
I am feeling blessed and safe and happy as we slip through Christmas Eve and into Christmas Day. My children are home and healthy. My family is together under one roof. What a joy to be able to spend the holidays here in sunny Phoenix.
Merry Christmas everyone!!
Saturday, December 14, 2013
Are we leaving for Africa for a month? Or Phoenix for 10 days? I can't tell!!
Whenever my mother packs for a trip, regardless of length of time she will be gone, she makes a list of what she needs to take. She spells it out. 5 pairs pants. 5 shirts. 5 under ware. You get the picture. And then as she packs the items it into the suitcase, she crosses it off. 5 pairs pants. 5 shirts. 5 under ware. I've picked this habit up from time to time, as it really does cater to the OCD in me. Right now, I have lists for my lists. And darn it, nothing is getting crossed off! I have things to pack. I have meds to remember to pick up to pack. I have notes and itineraries and contact information to remember to print off. I have to keep Jackson out of the friggen ER long enough to get his ass on a plane!! And I have to fit in a clinic visit, a blood draw, and his 2nd RSV shot next week. This is one of those times I am thankful for Chris' unemployment.
Jackson has been fighting a cold since Thanksgiving.
We were in the ER last Saturday, admitted to the 9th floor overnight for observation for low sats.
We were back in the ER Tuesday, for low sats and a high heart rate. This time I managed to escape with him the same day.
We chalked the heart rate up to the higher doses of diuretic he had gotten in the overnight stay from the weekend. I really, really don't envy his cardiologist for having to figure out just the right balance of meds to keep Jackson's heart and lungs happy. I really, really don't. Right now, he's too dry, so we're back to every other day. For how long, who knows.
I've printed, I shit you not, 10 blank December calendars to take to Phoenix in an effort to organize myself down there without the benefit of the blood draw lab, or his cardiologist, being more than a 20 minute drive away. I am fearful Chris will need to take my phone away down there so I am not texting Adel a gazillion times a day out of fear.
Taking two children on a plane ride to Phoenix sounds simple enough. But then add in 2 car seats, a stroller, a pulse ox, a suction machine, a feeding pump, meds (Jackson and me), shit to keep a 4 year old busy for a 2 hour flight, the 18 tons of paperwork for approval to bring portable oxygen and medication on a plane, the actual oxygen itself, 2 adults (one of which will be a nervous wreck) and 2 children. Luggage up the wazoo. Good lord, seriously?!?!? We may not travel again as a family of four until my kids are 18!!
Jackson has been fighting a cold since Thanksgiving.
We were in the ER last Saturday, admitted to the 9th floor overnight for observation for low sats.
We were back in the ER Tuesday, for low sats and a high heart rate. This time I managed to escape with him the same day.
We chalked the heart rate up to the higher doses of diuretic he had gotten in the overnight stay from the weekend. I really, really don't envy his cardiologist for having to figure out just the right balance of meds to keep Jackson's heart and lungs happy. I really, really don't. Right now, he's too dry, so we're back to every other day. For how long, who knows.
I've printed, I shit you not, 10 blank December calendars to take to Phoenix in an effort to organize myself down there without the benefit of the blood draw lab, or his cardiologist, being more than a 20 minute drive away. I am fearful Chris will need to take my phone away down there so I am not texting Adel a gazillion times a day out of fear.
Taking two children on a plane ride to Phoenix sounds simple enough. But then add in 2 car seats, a stroller, a pulse ox, a suction machine, a feeding pump, meds (Jackson and me), shit to keep a 4 year old busy for a 2 hour flight, the 18 tons of paperwork for approval to bring portable oxygen and medication on a plane, the actual oxygen itself, 2 adults (one of which will be a nervous wreck) and 2 children. Luggage up the wazoo. Good lord, seriously?!?!? We may not travel again as a family of four until my kids are 18!!
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