So today I was digging around FB looking for a picture to show a friend. I never found it, but that's not what this is about. I came across photos on both of my sister's FB pages of Jax during some of his most difficult times. Right after he was born. When he was sedated and paralyzed after his mechanical valve was placed. Photos from when he had pins in his head for skull distraction. All things that bring tears to my eyes!
Remembering those moments is a hard, harsh reminder of everything that Jaxson has been through, and everything that he has yet to endure. But it is also a moment of wonder; look how far he has come! How many times has he defied the odds? Proven doctors wrong? Made us look for answers until we found them? I can't even count!
Jaxson has been through 12 surgeries and countless sedated procedures. He's been more stable over the last two years since his mechanical valve was placed, and his growth and maturation have blossomed into something beautiful. He's so smart, even if he can't always communicate it, and he is hysterically funny and loves to make jokes. He wants everyone to get along all the time and hates yelling (even at the dogs!). He is running, jumping, riding his tricycle and attempting to beat up his big brother when they play. He's a "normal" 5 year old in almost every aspect!
Does he have hurdles still in front of him? Of course. He has a compromised immune system that will likely land him in the hospital at least once a year in the winter. He has more heart surgeries to come as he grows and his valve needs replaced. He has weekly therapies outside of school, plus what he gets at school, to help combat his Global Delay and get him ready for kindergarten. He may need additional surgeries in the future, something we won't know until we get there.
But for now, Jaxson is healthy. He's stable. He has a ton of appointments, but all of them are follow-ups and not for a new problem. He brings joy to every person he encounters, just by flashing his adorably perfect smile. His new PT marveled to me the other day, it was their first appointment together, that he had made her whole morning. She was smiling and laughing as she brought him back because that spunky personality just makes you laugh!
I have tears, I hoped I wouldn't when writing this, but I do. I just can't get over how far Jaxson has come. Everything he has been through, every battle we've had to fight with him and make sure that he got what he needed, every tear we've shed and every sleepless night we have, it's all worth it. When I see him get off the bus and run to his brother or me or his dad (depends on who gets him off) with a huge smile on his face and a massive hug, I can't imagine anything better.
Jaxson, one day you will read these blogs. I've tried to keep up as best I can, and I know I'm not perfect at it, but I really hope that one day you will see the love you bring to people, and the love that people have for you. I hope you see that while mom was stressed and upset, I still made you and Jeffrey a priority. You are the light of my life, my little monkey. I know God has big things planned for you, and I can't wait to see what else you do to prove people wrong and be the most amazing you there is! <3
"Life is not the way it's supposed to be, it is the way it is. It's the way you cope with it that makes the difference."
Thursday, September 28, 2017
Friday, December 16, 2016
A Not-So-Friendly Reminder
Jaxson had his 12th surgery on December 5, 2015. It was his second open-heart surgery, the one where they placed his mechanical mitral valve. We spent three weeks in the hospital last year, but were lucky enough to make it home three days before Christmas. Jaxson's first Christmas was spent at the hospital when he had RSV at 5 months of age. He was discharged on Christmas day. I had to go back and look, but his second Christmas was spent at home. Only that year we were struggling so bad that the kids barely got anything from us. We did get donations that year, though, and the kids still had a good Christmas. It might not be Christmas yet this year, but it's pretty damn close. And here we are at the hospital once again with a case of RSV.
RSV is a respiratory virus that can cause bronchiolitis or pneumonia in children who have heart and lung disorders. In typical kids, it's a cold that requires monitoring and comfort as it mimics a common cold, but nothing more. In kids like Jax, it can be deadly. Most kids get it before the age of 1, but only a few who get it will get it again. This is Jaxson's second round with it, at an age it doesn't normally happen. On top of that, he has angiodysplasia of the colon (meaning the capillary blood vessels are weak and break easily) which causes bloody stool. Combine that with a high INR and now he has low iron. All of his other levels seem to be okay for the moment, but they are checking him regularly to make sure nothing drastically changes.
And thus is the ugliness of Kabuki Syndrome rearing it's even uglier head. Respiratory problems are common, and while Kabuki itself does not cause premature death, the problems it causes can. Like intense respiratory infections and viruses that don't respond to treatment, or take a really long time to do so. And here I thought Jaxson was going to be relatively "typical" from this point forward. I guess the joke is on me for putting on rose-colored glasses after a year with no admissions. (There was actually one, but it was only one night and it was to keep him hydrated for a procedure.)
So now that I've been brought back down to Earth, I have been doing some research on RSV and all of his other stuff. Nothing noteworthy yet, I haven't found anything that I didn't already know. But I do know that we won't be getting out of here today. And here I thought we were out of the woods. I forget that when you have a child with CHD who is also prone to respiratory problems, you are never out of the woods. Every illness is alarming. Every hospitalization has its own problems. Even if it's an illness that's happened before, this one will be different. It's an ever-changing thing because kids grow and change, their hormones and antibodies and bloodwork levels change. The way they react to treatment changes. It's an ongoing battle of figuring out what the problem is and how to tackle it in the most effective manner.
It is clear that winter is going to be a rough time for the rest of our lives. Keeping Jaxson healthy and out of the hospital has been near impossible over the last four years, with the exception of this past year, and I don't see it changing anytime soon.
The thing is, while worrying about Jaxson is always in the back of my head, in times like this I always worry about Jeffrey too. He's so worried about his brother, and because of flu restrictions, he can't come up and visit because he's too young. Both of them are cranky about it. And Jeffrey misses me, and I miss him. He gets shafted on so many things, we decided to take him to Chuck E. Cheese for his birthday last weekend. And then Jax gets sick. And Jeffrey loses out on doing certain things. We always try to keep it as normal as possible, but it's never normal when Jax isn't around. For instance, tomorrow the boys were supposed to go to the school where my dad works to play games and see Santa. Jaxson will not get to go now, but Jeffrey will. Only he won't have as much fun because Jax won't be there and he'll spend the whole time thinking about his brother. On Sunday, I had scheduled a private visit with Santa so we could get some decent pictures without the crowds. Not sure if Jax will make it for that either. I honestly don't think Jaxson has any photos with Santa yet, and he's 4. But Jeffrey will not like going on Sunday without Jaxson either and it's likely that he'll ask Santa for something for Jax. It just breaks my heart.
For now, I hope the doctors get to us soon so we can find out what's going on and what the plan is. I know we'll be here at least one more night, but I'm not sure if they have concerns over anything else yet. I pray we can go home tomorrow, or maybe even Sunday before photos. Please pray for the same with me.
RSV is a respiratory virus that can cause bronchiolitis or pneumonia in children who have heart and lung disorders. In typical kids, it's a cold that requires monitoring and comfort as it mimics a common cold, but nothing more. In kids like Jax, it can be deadly. Most kids get it before the age of 1, but only a few who get it will get it again. This is Jaxson's second round with it, at an age it doesn't normally happen. On top of that, he has angiodysplasia of the colon (meaning the capillary blood vessels are weak and break easily) which causes bloody stool. Combine that with a high INR and now he has low iron. All of his other levels seem to be okay for the moment, but they are checking him regularly to make sure nothing drastically changes.
And thus is the ugliness of Kabuki Syndrome rearing it's even uglier head. Respiratory problems are common, and while Kabuki itself does not cause premature death, the problems it causes can. Like intense respiratory infections and viruses that don't respond to treatment, or take a really long time to do so. And here I thought Jaxson was going to be relatively "typical" from this point forward. I guess the joke is on me for putting on rose-colored glasses after a year with no admissions. (There was actually one, but it was only one night and it was to keep him hydrated for a procedure.)
So now that I've been brought back down to Earth, I have been doing some research on RSV and all of his other stuff. Nothing noteworthy yet, I haven't found anything that I didn't already know. But I do know that we won't be getting out of here today. And here I thought we were out of the woods. I forget that when you have a child with CHD who is also prone to respiratory problems, you are never out of the woods. Every illness is alarming. Every hospitalization has its own problems. Even if it's an illness that's happened before, this one will be different. It's an ever-changing thing because kids grow and change, their hormones and antibodies and bloodwork levels change. The way they react to treatment changes. It's an ongoing battle of figuring out what the problem is and how to tackle it in the most effective manner.
It is clear that winter is going to be a rough time for the rest of our lives. Keeping Jaxson healthy and out of the hospital has been near impossible over the last four years, with the exception of this past year, and I don't see it changing anytime soon.
The thing is, while worrying about Jaxson is always in the back of my head, in times like this I always worry about Jeffrey too. He's so worried about his brother, and because of flu restrictions, he can't come up and visit because he's too young. Both of them are cranky about it. And Jeffrey misses me, and I miss him. He gets shafted on so many things, we decided to take him to Chuck E. Cheese for his birthday last weekend. And then Jax gets sick. And Jeffrey loses out on doing certain things. We always try to keep it as normal as possible, but it's never normal when Jax isn't around. For instance, tomorrow the boys were supposed to go to the school where my dad works to play games and see Santa. Jaxson will not get to go now, but Jeffrey will. Only he won't have as much fun because Jax won't be there and he'll spend the whole time thinking about his brother. On Sunday, I had scheduled a private visit with Santa so we could get some decent pictures without the crowds. Not sure if Jax will make it for that either. I honestly don't think Jaxson has any photos with Santa yet, and he's 4. But Jeffrey will not like going on Sunday without Jaxson either and it's likely that he'll ask Santa for something for Jax. It just breaks my heart.
For now, I hope the doctors get to us soon so we can find out what's going on and what the plan is. I know we'll be here at least one more night, but I'm not sure if they have concerns over anything else yet. I pray we can go home tomorrow, or maybe even Sunday before photos. Please pray for the same with me.
Friday, April 8, 2016
More About Milestones, Update on Progress
I know I've been talking about milestones a lot recently, but it's because Jaxson is doing better than he ever has in his life. Which means that he's surpassing milestones at a much faster pace than before, which is amazing to watch! There will be an album of photos uploaded with this blog because there's just so much to share!
Jax managed to have all three of his home-based appointments this week! That one's amazing because there's always something coming up. But he did, and at each appointment he impressed me with things he was able to do and understand.
On Monday, Miss Jennifer came over for speech. Jax worked on putting things in order, recognizing an action from a picture, using his words to get what he wants, and recognizing facial expressions. Seriously, he did fabulous! Putting pictures of an action in order is a hard thing, and he didn't get them all, but got more than I thought he would. He used his words much more appropriately, recognized several actions from pictures and started to understand the difference between a smile and a frown. He had a speech appointment on Thursday at NCH as well, and with Miss Mary Jax started referring to himself as "me" or "I" instead of "Jaxson" in the third person. He also recognized more farm animals!
Yesterday, OT came to the house to work with Jax and play. He did some coloring, he recognized that Elmo was jumping in his picture, he stacked items with ease and had no trouble with the wooden puzzle Miss Dara brought. We also practiced throwing and catching, which is going to take some work with his awful balance and coordination!
Today, Miss Kathy came over to work on communication and social skills. Jaxson successfully clipped several frogs to their matching color on a piece of paper, matched shapes drawn on clothespins in a similar task, was not interested in coloring at all, and he worked more on recognizing an action in a photo, matching toy items with what was happening in a book, and flipping frogs into a bowl. There's a video of him flipping the frogs, which I took because it's seriously amazing. I don't know if I ever thought he'd be able to do something like that, it's totally not easy even for a typical kid, but he tackled it first with his finger and did even better with his thumb.
Jaxson impresses me all the time. He is so independent and wants to do everything that we do, even eat when he's feeling well. Not meals or anything, but a few nibbles here and there. Something is better than nothing! He is full of life and love and energy and spunk and an ornery grin to get him out of serious trouble! He's amazingly perfect and doing so many things we once couldn't even consider. I mean, when he was born, the doctors didn't know how long he'd live, let alone what kind of life he would have. Now look at him. Vibrant and strong, a warrior to the bone who continues to defy all odds and win battles he could have easily lost.
Our family is on the rise, finally. Four years of hard work, patience, scraping by and barely getting out of bed in the morning have given way to a much more relaxing life. There are still a ton of concerns with Jax, lots of things we are watching and communicating with doctors about. But there's so much to celebrate, I don't want to talk about the rest. Jax is happy, he's as healthy as he's going to get and always and forever my little lover boy cuddlebug. :)
~Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference. -Unknown
Jax managed to have all three of his home-based appointments this week! That one's amazing because there's always something coming up. But he did, and at each appointment he impressed me with things he was able to do and understand.
On Monday, Miss Jennifer came over for speech. Jax worked on putting things in order, recognizing an action from a picture, using his words to get what he wants, and recognizing facial expressions. Seriously, he did fabulous! Putting pictures of an action in order is a hard thing, and he didn't get them all, but got more than I thought he would. He used his words much more appropriately, recognized several actions from pictures and started to understand the difference between a smile and a frown. He had a speech appointment on Thursday at NCH as well, and with Miss Mary Jax started referring to himself as "me" or "I" instead of "Jaxson" in the third person. He also recognized more farm animals!
Yesterday, OT came to the house to work with Jax and play. He did some coloring, he recognized that Elmo was jumping in his picture, he stacked items with ease and had no trouble with the wooden puzzle Miss Dara brought. We also practiced throwing and catching, which is going to take some work with his awful balance and coordination!
Today, Miss Kathy came over to work on communication and social skills. Jaxson successfully clipped several frogs to their matching color on a piece of paper, matched shapes drawn on clothespins in a similar task, was not interested in coloring at all, and he worked more on recognizing an action in a photo, matching toy items with what was happening in a book, and flipping frogs into a bowl. There's a video of him flipping the frogs, which I took because it's seriously amazing. I don't know if I ever thought he'd be able to do something like that, it's totally not easy even for a typical kid, but he tackled it first with his finger and did even better with his thumb.
Jaxson impresses me all the time. He is so independent and wants to do everything that we do, even eat when he's feeling well. Not meals or anything, but a few nibbles here and there. Something is better than nothing! He is full of life and love and energy and spunk and an ornery grin to get him out of serious trouble! He's amazingly perfect and doing so many things we once couldn't even consider. I mean, when he was born, the doctors didn't know how long he'd live, let alone what kind of life he would have. Now look at him. Vibrant and strong, a warrior to the bone who continues to defy all odds and win battles he could have easily lost.
Our family is on the rise, finally. Four years of hard work, patience, scraping by and barely getting out of bed in the morning have given way to a much more relaxing life. There are still a ton of concerns with Jax, lots of things we are watching and communicating with doctors about. But there's so much to celebrate, I don't want to talk about the rest. Jax is happy, he's as healthy as he's going to get and always and forever my little lover boy cuddlebug. :)
~Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference. -Unknown
Monday, March 28, 2016
Every Milestone Makes a Difference
I can't believe it's been so long since I've updated the blog. Things have been so busy recently, I've been working, Jayson has been working, Jeffery is doing well at school academically but hates going (which I think is weird for a first grader) and Jax had has his usual slew of appointments. But that's not what this post is about. This post is about an accumulation of baby steps amounting into something tangible measurable, a realization I came to during our very busy Easter weekend.
Jeffrey did not have school on Friday and Jayson didn't have to work because it was Good Friday, so when it came time for me to work in the afternoon, Jayson took the boys to visit his mom and Jeffrey spent the night. He was picked up pretty early on Saturday because we went to an Easter Egg hunt at a park in my parent's neighborhood. We were there for HOURS! It was a blast. Then we went home for a few, I had some errands to run for Sunday, and then I came back to get the boys. I took them to pick up my parents from the airport (they spent the week before in Ireland!), so of course we stayed to visit for awhile. The boys didn't go to bed until really late, and I had to wait until they were out to do their Easter stuff. Easter morning was a sleepy one, but when Jeffrey finally got out of bed, the boys got to see their baskets (giant surprise eggs I made using items from Dollar Tree), and when it warmed up we went outside. We didn't go anywhere yesterday, but we played outside most of the day. Although, I did get a nap too, thanks to Jayson!
I wanted to let everyone know what we did before I elaborated on milestones. You can see it was a busy weekend, and both boys are pretty worn down today, which is great since I'm not feeling well! Must have picked up a stomach bug at the park haha.
So, let's backtrack a little. Thinking back to when Jaxson was born, we had no clue what the extent of his disability would be. The doctors didn't even know if he would survive or for how long or anything. He had no diagnosis, so no prognosis. We were thrown into a world we were unfamiliar with, one which was terrifying and gratifying all at the same time. We knew we'd have lots of specialists, but our biggest concern was making sure Jax would be as normal as possible. So we started OT/PT and Speech early in his life. Weekly and bi-weekly appointments for the last four years (going back to the end of my pregnancy), plus specialist visits and countless tests has been exhausting. But watching Jaxson this weekend, I realized that every little hurdle and obstacle we endured were absolutely worth it.
I get a little sad watching Jaxson on the playground sometimes. Especially when there's a lot of kids, and this weekend there were a LOT of kids. Excited kids who are just kids. Jaxson can't keep up with them. He can't climb like they can, he's terrified to try the slide by himself around a lot of people, and he gets brushed to the side, passed by pushy kids trying to get to the slides, and sometimes he just stops to let all the other kids go before he keeps trying. It breaks my heart to see this. But yesterday Jaxson taught me something. He taught me that he has more determination and drive than I realized.
Take a look at this picture:
Jayson found a plank of wood and put it diagonal from the driveway to the yard because there's a huge gap between it and the ground. Jaxson was scared of it at first and wouldn't try, but all I had to do was help him once. Once. Then he was off, walking up and down the ramp, chasing Jeffrey and even tripping a few times with no tears. He would just get up and go again!
This is so different than how things used to be. You're looking at a kid who is terrified to use steps he doesn't know, doesn't want to climb on things without someone close by and has very little confidence in his capabilities. We try constantly to have him do as much as he is willing to do by himself, but it's not always much no matter how hard we push.
So Jaxson really recognized that he was different this weekend, noticed that he couldn't keep up, and he didn't like it. He won't work on those skills anywhere outside of his comfort zone, so this ramp is a big step in him gaining confidence in himself. And he wouldn't even be where he is without all of the ridiculous nonsense he's been through. PT, OT, Speech, surgeries, meds, hospital stays, all of it. Every little step, as tiny as sitting up on his knees for five seconds without help, has contributed to where he is. And he is amazing!
Noticing this on Easter I think had a more profound impact on me than it would have on any other day. Easter is about celebrating Christ forgiving our sins, which goes hand in hand with starting over and having a new beginning. Jax got his new beginning in December when they replaced his mitral valve during his second open-heart surgery. It's taken some time for him to get back to normal, and his normal is definitely not what it used to be! He's highly energetic and rotten and smart and funny and caring and a huge lover. He's independent as much as he can be, and gets mad when you try to help him before he's ready. I don't know where he gets that ;)
So this will be a new beginning for all of us. A new beginning as a family that can finally do things together without as much worry. Taking Jax to the park on a day like Saturday even six months ago would have meant a hospital stay with a respiratory issue gone out of control. Not now. He may get a runny nose or sneeze or even get a little cold, but it's not an automatic stay anymore. We still have to be very careful because of his heart, he is still more susceptible to illness, but we can relax a little and take him out of the house with more ease now. Which means plenty more trips to the park, COSI, the zoo, wherever I feel like taking them this summer!
So, for mom's out there who are dealing with the beginning stages of this journey, please know that every step is rewarding in it's own way. Every step is a learning experience, every milestone a celebration, every corner turned a relief. Jaxson still has many problems and I still have to watch him like a hawk, but his physical ability is far greater than we every thought it would be. And when that hits you like a ton of bricks on Easter, it's pretty deep.
~"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." -Anonymous
Sunday, December 20, 2015
No Matter What, Be Thankful
Today I am sitting in the hospital for the 17th straight day/night. It's Jaxson's longest stay since he was in the NICU for 45 days right after he was born. Everyone wants to know if he's going to be home for Christmas, and I don't have an answer. What I want to say is that he should be, he should be out in a couple of days. But it's Jax, and using terms like "should" and "normally" do not apply. This is the kid who saw his INR spike up to 8.8, then plummet, and now we're back up to the dose that put him at 8.8 and he's not even at 2. Let that sink in before you read too much more because that is life with Jaxson. He doesn't tell us his rules, he just does what he does.
So as I sit here contemplating having him spend his second of four Christmases in the hospital, I get a painful reminder of how thankful I need to be.
Thankful? Yes, you read that right. We may spend a lot of time at the hospital, Jax may have had 12 surgeries (and counting), and we may not know when we get to go home again, but one thing I can tell you is certain: We WILL go home. I may not have been able to say that a few days ago, but I can now. I know we will go home, and even if he doesn't get to come home for Christmas, he will still be here on this earth.
As the mom of a special needs baby/child, you make connections with other moms just like you. Usually you find moms that deal with similar issues as you, but that's not always the case and sometimes that's nice too. Right now, there are two groups of moms I feel most connected to: Congenital Heart Disease moms and Kabuki moms. And sometimes those moms are both.
A CHD mom knows the struggle of seeing your child turn colors, have no energy, struggle to breathe, sweat way too much, and have to give meds that are usually saved for the elderly. A Kabuki mom knows the struggle of sensory issues, feeding therapy, developmental delay, behavior problems and a slew of other things. And, again, sometimes the two overlap.
One thing that overlaps is something no one wants to think about, let alone talk about, and that is losing your child to the disease that ravages their body. I have mom friends on both sides who have lost children and babies to both diseases. And you know what? They would trade places with me in a heartbeat. I know they would because if the roles were reversed, I would.
Every mom is an advocate for her child. If your child is hit by a drunk driver or someone texting and driving and they become severely disabled or worse, you become an advocate for education and law reform in those areas. The same applies for medical disabilities. You become an advocate for your child, you are their voice to be heard and you will not let your voice fall on deaf ears. I've been here over two weeks and contacted a patient liaison because I couldn't get through to the doctors. I'm pretty independent and stubborn, asking for help is not something I do well or easily. But moms need help too, and moms can only do so much. And what our babies really need when they're sick is for mom to be there to comfort them. How can I do that if my head is constantly aswirl with things I feel I need to handle? So I asked for help, and I'm glad I did. I have been able to relax and enjoy this weekend with my son.
Which brings me back to the point. My son is here. I can physically see him, touch him, kiss his cheeks, ruffle his hair, hear him laugh, hear him cry, watch his personality grow, yell at him when he doesn't listen, cuddle him when he cries. There are so many parents out there who not only have to spend this holiday without their precious baby(s), but many who suffered the loss during this time of year.It's painfully heartbreaking to see people I love grieve so hard. And if it's painful for me, I can't imagine what it must feel like for them.
So, those of you who are in these shoes, you know who you are. Know that you are loved, you are prayed for, you are thought of. Not just by me, although I do include myself, but your families love you and need you in their lives. Moms like me need you to share your experiences, help us learn things we haven't come across yet, teach us what it really means to be a warrior's mom. Because, like the warrior''s of old, our tiny warriors don't always make it home either. They say it takes a village to raise a child. It also takes a village to keep the mother of a warrior in one piece when needed.
However you choose to remember those lost too soon, make sure you do it before Christmas this year. Light a candle. Let go of a balloon. Write on a rock and throw it in the river. Tie a ribbon around your car antenna or telephone poles in your area. Pass out flyers. Give out bracelets. Whatever it is that you do, be sure to do it this week. The moms of these amazing human beings that were taken cannot do this on their own and it is our job to make sure they don't have to.
So tonight I am thankful. Thankful for my own life and health, and thankful that, at least for now, Jaxson is still with us and will eventually come home. Thankful that his brother is a happy and healthy 7 year old with more energy than any 25 people I know. Thankful that I have a husband who loves me, step-sons that respect me, a job that allows me to stay by Jaxson's side and a support system of family and friends that come to the rescue whenever we need it. I will not be sad if Jax can't come home this week. Okay, maybe a little. But I will be thankful that I have him, for however long God decides, he is mine. Cherish your loved ones, tell them you love them often. Don't get caught up in "things". Enjoy your kids for who they are and who they will become. They are all amazing, regardless of ability.
So as I sit here contemplating having him spend his second of four Christmases in the hospital, I get a painful reminder of how thankful I need to be.
Thankful? Yes, you read that right. We may spend a lot of time at the hospital, Jax may have had 12 surgeries (and counting), and we may not know when we get to go home again, but one thing I can tell you is certain: We WILL go home. I may not have been able to say that a few days ago, but I can now. I know we will go home, and even if he doesn't get to come home for Christmas, he will still be here on this earth.
As the mom of a special needs baby/child, you make connections with other moms just like you. Usually you find moms that deal with similar issues as you, but that's not always the case and sometimes that's nice too. Right now, there are two groups of moms I feel most connected to: Congenital Heart Disease moms and Kabuki moms. And sometimes those moms are both.
A CHD mom knows the struggle of seeing your child turn colors, have no energy, struggle to breathe, sweat way too much, and have to give meds that are usually saved for the elderly. A Kabuki mom knows the struggle of sensory issues, feeding therapy, developmental delay, behavior problems and a slew of other things. And, again, sometimes the two overlap.
One thing that overlaps is something no one wants to think about, let alone talk about, and that is losing your child to the disease that ravages their body. I have mom friends on both sides who have lost children and babies to both diseases. And you know what? They would trade places with me in a heartbeat. I know they would because if the roles were reversed, I would.
Every mom is an advocate for her child. If your child is hit by a drunk driver or someone texting and driving and they become severely disabled or worse, you become an advocate for education and law reform in those areas. The same applies for medical disabilities. You become an advocate for your child, you are their voice to be heard and you will not let your voice fall on deaf ears. I've been here over two weeks and contacted a patient liaison because I couldn't get through to the doctors. I'm pretty independent and stubborn, asking for help is not something I do well or easily. But moms need help too, and moms can only do so much. And what our babies really need when they're sick is for mom to be there to comfort them. How can I do that if my head is constantly aswirl with things I feel I need to handle? So I asked for help, and I'm glad I did. I have been able to relax and enjoy this weekend with my son.
Which brings me back to the point. My son is here. I can physically see him, touch him, kiss his cheeks, ruffle his hair, hear him laugh, hear him cry, watch his personality grow, yell at him when he doesn't listen, cuddle him when he cries. There are so many parents out there who not only have to spend this holiday without their precious baby(s), but many who suffered the loss during this time of year.It's painfully heartbreaking to see people I love grieve so hard. And if it's painful for me, I can't imagine what it must feel like for them.
So, those of you who are in these shoes, you know who you are. Know that you are loved, you are prayed for, you are thought of. Not just by me, although I do include myself, but your families love you and need you in their lives. Moms like me need you to share your experiences, help us learn things we haven't come across yet, teach us what it really means to be a warrior's mom. Because, like the warrior''s of old, our tiny warriors don't always make it home either. They say it takes a village to raise a child. It also takes a village to keep the mother of a warrior in one piece when needed.
However you choose to remember those lost too soon, make sure you do it before Christmas this year. Light a candle. Let go of a balloon. Write on a rock and throw it in the river. Tie a ribbon around your car antenna or telephone poles in your area. Pass out flyers. Give out bracelets. Whatever it is that you do, be sure to do it this week. The moms of these amazing human beings that were taken cannot do this on their own and it is our job to make sure they don't have to.
So tonight I am thankful. Thankful for my own life and health, and thankful that, at least for now, Jaxson is still with us and will eventually come home. Thankful that his brother is a happy and healthy 7 year old with more energy than any 25 people I know. Thankful that I have a husband who loves me, step-sons that respect me, a job that allows me to stay by Jaxson's side and a support system of family and friends that come to the rescue whenever we need it. I will not be sad if Jax can't come home this week. Okay, maybe a little. But I will be thankful that I have him, for however long God decides, he is mine. Cherish your loved ones, tell them you love them often. Don't get caught up in "things". Enjoy your kids for who they are and who they will become. They are all amazing, regardless of ability.
Tuesday, December 1, 2015
Jaxson's Heart Cath
The first thing you should know about Jaxson's heart cath on Friday is that this is a VERY rare case. Dr. Berman was very informative today at our appointment, and he said that if we knew a doctor who said that it wasn't rare, he wanted to meet him haha. Most mitral valves get ballooned after damage from rheumatic fever. Doing a balloon after a repair is rare, and having his mitral valve repaired at his age is also pretty rare. The goal of this procedure is to buy Jaxson time to get a little bigger before he has to have his mitral valve completely replaced.
That said, Dr. Berman and the other two cath doctors are taking a very conservative approach to this. Dr. Cheatham is the head of the cath lab, and he has developed new balloons for cath's that are now used all over the world. He is literally at the top of the field, and he hand-picked Dr. Berman and the other cath doctor whose name I can't remember. All three of them will be in on Jaxson's procedure, and Dr. McConnell is the surgeon on call if anything were to go wrong and immediate surgery is needed.
Jaxson's case isn't just rare, it's extremely complicated. They will run a cath through his femoral artery in his thigh and they will also have a transesophogeal echo camera in place while they do the cath as well. Before they attempt to balloon anything, they will run the cath through the arteries in his heart to measure the pressure inside his heart and lungs. This will establish a baseline for them to know if something isn't working well or is causing a problem during the procedure. They will use contrast dye to help clear up the pictures from the TEE scope, which will enable precise movement of the cath inside the heart. Once that is done, they will start with the smallest balloon available to see if they can open the valve. If that is successful, they will move to the next size and so on.
There are a few major risks that have to be considered during this procedure. One is that they are assuming Jaxson has at least moderate pulmonary hypertension, if not severe. That means the pressure in his lungs is really high, and if something causes additional pressure that the heart can't handle, it could cause problems. Stroke is one, and so is death. The risk of these two is minimal, but Jax is at a higher risk because of the pressure. They do not anticipate either of these presenting, but it is something we have to keep in mind. Another risk is that with part of the cath, they use a needle to poke through a certain wall in the heart to get access to the upper chambers, so when they do that it could cause a puncture of the heart or a major blood vessel that would require immediate surgery. Again, not something anticipated, but something to bear in mind. It could also be that he has a septal defect not seen on previous scans, in which case the needle used to go through that wall would slide through that hole instead of creating a new one. Septal defects (hole in the heart) are common with Kabuki, so it's a definite possibility even though we haven't seen it before.
Those are just the cath risks, the things that could happen based on a cath being inserted into the heart to gather information.
Once they are through with the first part, then they will attempt to balloon the valve. Again taking a conservative approach, starting with the smallest balloon and working up. When the balloon is attempted, even with the small one, it could cause leakage from the valve into the heart. Some amount of leakage is an acceptable trade-off that can be lived with until the valve is replaced. If it's a big leak, it's straight to the OR. There is risk of a tear or rupture of a heart vessel that could require surgery, risk of weakening of the vessel wall leading to aneurysm, and risk of damage to the leg artery or vein where the cath is inserted. There is a slight risk of the balloon breaking and not coming out through the cath properly, which would require surgical intervention but usually at the insertion site and not the heart.
There are so many things we have to be aware of and that the doctors are looking for and paying attention to in the lab. I think their approach is a good one, and I also believe that they will not take any chances on causing a leak. If they pull the balloon out and the mitral muscles do not stay open as they should, it's considered a complete fail. At that point we would be looking at replacing the valve as our next step, although I do not think it would result in emergency surgery.
The doctors have requested that we be admitted on Thursday night so that Jax can be on IV fluids while he's not allowed to eat. Keeping him hydrated plays a factor in the success of the cath, so we agreed and will be going in sometime Thursday evening. After the procedure, Jax will go to the PICU for recovery. Depending on the pressure in his lungs, the breathing tube may or may not be removed at that time. They could potentially want him to keep it in for a day and be monitored in ICU, or if he does well they will remove it and we'll go to a regular room for the night. A cath procedure is typically a one-night stay, but Dr. Berman did say that we should be prepared for a weekend stay. It's something we have already prepared ourselves for, but hopefully Jaxson proves the doctors wrong as he has done on so many occasions and we will have a "normal" experience.
There is nothing normal about this procedure, though. It's one of those things that no one knows what's going to happen until they get in there. And it would have been the same in Boston. Jaxson continues to live in the gray-area that doctor's can't pinpoint how successful the procedure will be. They will measure the pressure in his heart and lungs after each balloon, so they will know pretty quickly if it's going to work. We do not know how long it will take to complete this procedure because the doctors are going to take their time and do everything in their power to minimize the risks.
If this works, it will be a miracle in my opinion. I'm already mentally prepared for them to have to rush him to emergency surgery because it's not working like it's supposed to. I really, really hope I'm wrong, but I'd rather be prepared than not. We will get updates via the EASE app again, which is nice, and they will call if anything crazy happens. My personal best case scenario is that the cath works. Period. It doesn't matter to me how long it lasts, just give the kid some time before he has to be put through another surgery. The worst-case scenario is emergency valve replacement, at least in my head. Obviously we worry about the other risks of stroke and death, but I honestly feel so comfortable with the approach that I don't really consider those as options that could happen. And, it's just too hard to go there. Do we know it's a possibility? Of course, but it's such a rare thing to have happen in any case that I think they'll be able to prevent major risks by being cautious.
We have had an immensely busy couple of weeks and it doesn't look to slow down any time soon. We've successfully moved everything from the old house to the new one, although there is some major work to do unpacking. Jax has appointments all week, I have an appt on Thursday, I met with Jeffrey's school counselor this morning, Jax's cath is Friday and Jeffrey's birthday is Monday. Then there's Grandma Julie's birthday and Christmas and New Year's. And if we're lucky, we'll manage to stay out of the hospital for the holidays, although Jax does love to be there on holiday's. Any holiday!
Right now, there are only a few things you can do to support us. One is PRAY! That's the biggest. Pray for the doctors and Jaxson, pray for Jeffrey to have understanding and not throw crazy fits, pray for Jayson and I to make it through this with our sanity intact and pray for the best possible outcome of this. Another thing you can do is help us replace some of the things we were unable to bring to the new house. For example, our fridge had to be left because it was in too bad of shape to bring. After living with bugs for 18 months, it was too gross to even clean. We also need a toaster (had to be left) an oven (we didn't have one), a bed frame and mattress for Jeffrey (he's been sleeping on a futon mattress, poor kid) and there's birthday's and Christmas coming. We were able to pick up another couch and a desk thanks to a good friend of mine, but we have to rent a truck to go get it and there's a lot more house to fill than there was before. We'd like to replace our dishes, silverware, etc. and things that we brought here out of necessity but really need to go. Finances are always tight during the holidays and hospital stays, and we have both this month. We feel like we finally caught a break in that area and want to keep it that way!
Thank you to everyone for your continued support and prayers. I feel like I say that all the time, but there is no better way to say it. We could not do this without all of you! We firmly believe in the power of prayer, and a lot of our prayers have been answered recently. We feel very blessed and extremely lucky to have such an amazing support group! Thank you just never seems like enough. We love you all!
That said, Dr. Berman and the other two cath doctors are taking a very conservative approach to this. Dr. Cheatham is the head of the cath lab, and he has developed new balloons for cath's that are now used all over the world. He is literally at the top of the field, and he hand-picked Dr. Berman and the other cath doctor whose name I can't remember. All three of them will be in on Jaxson's procedure, and Dr. McConnell is the surgeon on call if anything were to go wrong and immediate surgery is needed.
Jaxson's case isn't just rare, it's extremely complicated. They will run a cath through his femoral artery in his thigh and they will also have a transesophogeal echo camera in place while they do the cath as well. Before they attempt to balloon anything, they will run the cath through the arteries in his heart to measure the pressure inside his heart and lungs. This will establish a baseline for them to know if something isn't working well or is causing a problem during the procedure. They will use contrast dye to help clear up the pictures from the TEE scope, which will enable precise movement of the cath inside the heart. Once that is done, they will start with the smallest balloon available to see if they can open the valve. If that is successful, they will move to the next size and so on.
There are a few major risks that have to be considered during this procedure. One is that they are assuming Jaxson has at least moderate pulmonary hypertension, if not severe. That means the pressure in his lungs is really high, and if something causes additional pressure that the heart can't handle, it could cause problems. Stroke is one, and so is death. The risk of these two is minimal, but Jax is at a higher risk because of the pressure. They do not anticipate either of these presenting, but it is something we have to keep in mind. Another risk is that with part of the cath, they use a needle to poke through a certain wall in the heart to get access to the upper chambers, so when they do that it could cause a puncture of the heart or a major blood vessel that would require immediate surgery. Again, not something anticipated, but something to bear in mind. It could also be that he has a septal defect not seen on previous scans, in which case the needle used to go through that wall would slide through that hole instead of creating a new one. Septal defects (hole in the heart) are common with Kabuki, so it's a definite possibility even though we haven't seen it before.
Those are just the cath risks, the things that could happen based on a cath being inserted into the heart to gather information.
Once they are through with the first part, then they will attempt to balloon the valve. Again taking a conservative approach, starting with the smallest balloon and working up. When the balloon is attempted, even with the small one, it could cause leakage from the valve into the heart. Some amount of leakage is an acceptable trade-off that can be lived with until the valve is replaced. If it's a big leak, it's straight to the OR. There is risk of a tear or rupture of a heart vessel that could require surgery, risk of weakening of the vessel wall leading to aneurysm, and risk of damage to the leg artery or vein where the cath is inserted. There is a slight risk of the balloon breaking and not coming out through the cath properly, which would require surgical intervention but usually at the insertion site and not the heart.
There are so many things we have to be aware of and that the doctors are looking for and paying attention to in the lab. I think their approach is a good one, and I also believe that they will not take any chances on causing a leak. If they pull the balloon out and the mitral muscles do not stay open as they should, it's considered a complete fail. At that point we would be looking at replacing the valve as our next step, although I do not think it would result in emergency surgery.
The doctors have requested that we be admitted on Thursday night so that Jax can be on IV fluids while he's not allowed to eat. Keeping him hydrated plays a factor in the success of the cath, so we agreed and will be going in sometime Thursday evening. After the procedure, Jax will go to the PICU for recovery. Depending on the pressure in his lungs, the breathing tube may or may not be removed at that time. They could potentially want him to keep it in for a day and be monitored in ICU, or if he does well they will remove it and we'll go to a regular room for the night. A cath procedure is typically a one-night stay, but Dr. Berman did say that we should be prepared for a weekend stay. It's something we have already prepared ourselves for, but hopefully Jaxson proves the doctors wrong as he has done on so many occasions and we will have a "normal" experience.
There is nothing normal about this procedure, though. It's one of those things that no one knows what's going to happen until they get in there. And it would have been the same in Boston. Jaxson continues to live in the gray-area that doctor's can't pinpoint how successful the procedure will be. They will measure the pressure in his heart and lungs after each balloon, so they will know pretty quickly if it's going to work. We do not know how long it will take to complete this procedure because the doctors are going to take their time and do everything in their power to minimize the risks.
If this works, it will be a miracle in my opinion. I'm already mentally prepared for them to have to rush him to emergency surgery because it's not working like it's supposed to. I really, really hope I'm wrong, but I'd rather be prepared than not. We will get updates via the EASE app again, which is nice, and they will call if anything crazy happens. My personal best case scenario is that the cath works. Period. It doesn't matter to me how long it lasts, just give the kid some time before he has to be put through another surgery. The worst-case scenario is emergency valve replacement, at least in my head. Obviously we worry about the other risks of stroke and death, but I honestly feel so comfortable with the approach that I don't really consider those as options that could happen. And, it's just too hard to go there. Do we know it's a possibility? Of course, but it's such a rare thing to have happen in any case that I think they'll be able to prevent major risks by being cautious.
We have had an immensely busy couple of weeks and it doesn't look to slow down any time soon. We've successfully moved everything from the old house to the new one, although there is some major work to do unpacking. Jax has appointments all week, I have an appt on Thursday, I met with Jeffrey's school counselor this morning, Jax's cath is Friday and Jeffrey's birthday is Monday. Then there's Grandma Julie's birthday and Christmas and New Year's. And if we're lucky, we'll manage to stay out of the hospital for the holidays, although Jax does love to be there on holiday's. Any holiday!
Right now, there are only a few things you can do to support us. One is PRAY! That's the biggest. Pray for the doctors and Jaxson, pray for Jeffrey to have understanding and not throw crazy fits, pray for Jayson and I to make it through this with our sanity intact and pray for the best possible outcome of this. Another thing you can do is help us replace some of the things we were unable to bring to the new house. For example, our fridge had to be left because it was in too bad of shape to bring. After living with bugs for 18 months, it was too gross to even clean. We also need a toaster (had to be left) an oven (we didn't have one), a bed frame and mattress for Jeffrey (he's been sleeping on a futon mattress, poor kid) and there's birthday's and Christmas coming. We were able to pick up another couch and a desk thanks to a good friend of mine, but we have to rent a truck to go get it and there's a lot more house to fill than there was before. We'd like to replace our dishes, silverware, etc. and things that we brought here out of necessity but really need to go. Finances are always tight during the holidays and hospital stays, and we have both this month. We feel like we finally caught a break in that area and want to keep it that way!
Thank you to everyone for your continued support and prayers. I feel like I say that all the time, but there is no better way to say it. We could not do this without all of you! We firmly believe in the power of prayer, and a lot of our prayers have been answered recently. We feel very blessed and extremely lucky to have such an amazing support group! Thank you just never seems like enough. We love you all!
Friday, October 30, 2015
My Older Son is Not "Jaxson's Brother", His Name is Jeffrey and He is Amazing
All too often, siblings of special needs kids go overlooked and underappreciated. These children go through so much, and people don't even realize how strong they are. This week I realized just how much our family has to sacrifice on a daily basis to meet Jaxson's needs. The impact of Kabuki Syndrome on Jeffrey is wildly evident during the holidays.
This week, the final week in October, is typically filled with celebration. Kids bounce off the walls in anticipation of Trick or Treat, parents do their best not to rip out their hair, and it finally feels as if fall has arrived. With fall and the return to school, germs and bacteria are spread in vast arrays all over the country. A typical child will get the cold or whatever bug happens to be ravaging the school, and recover in a short period. Kids with depressed immune systems or who are more susceptible to illness are not so lucky.
Thus is the case with Jaxson. He has not been diagnosed with an immune deficiency yet. I say "yet" because it is possible that he will develop the problem as he gets older, it is very common in Kabuki. Jaxson also has a slew of issues that make it hard for him to fight colds, and a bout of any respiratory problem is bound to land him in the hospital. His mitral valve is causing blood to back up into the right side of his heart and put pressure on his lungs causing them to retain fluid and he has pulmonary hypertension. On top of that, Jaxson has Reactive Airway Disease, which is a step below asthma. He doesn't have attacks, but his airway is extremely sensitive. Nasal and sinus drainage give him major coughing fits, sometimes to the point he gets sick, and his body can't protect his lungs from such drainage properly. So when Jeffrey stayed home for a week with what we thought was a virus, we did our best to keep him away from his brother. Any parent knows how impossible that is.
I knew when Jeffrey got sick that Jax was going to get it and eventually need admitted. I hate being right, but I guess mom's just know their kids. Because of Jaxson getting sick, the boys didn't get to have the celebration we had planned for them. On Sunday, there was a Halloween party for kids with congenital heart disease through Mended Little Hearts of Columbus. We RSVP'd that we would be there, but Sunday was the day Jax was admitted. When we couldn't go to that, Jayson was sweet enough to take Jeffrey to a local event so that he could still have some fun even though he was bummed we missed the party. He and daddy also painted his pumpkin while Jax was in the hospital, Jayson wanted to give Jeffrey a distraction and show him some special attention. He's such a good daddy! But missing out on those things wasn't all. Jaxson could not go Trick or Treating last night because he's still fighting the remnants of the flu, so Jayson took Jeffrey with some friends while Jax and I stayed home. I tried to have him paint his pumpkin, but he wanted nothing to do with it. I know he was upset he didn't get to go, even if he can't voice it. And now today, Jeffrey has his Halloween party at school. Last year I dressed Jax in his costume and we went up to hang out with his class. I told Jeffrey this morning that we wouldn't be able to go, and he just says, "I know," and looks down at his donuts sadly.
Seeing that broke my heart. Jeffrey is such an amazing kid, and he's all too often swept to the side because Jaxson needs extra attention. Jeffrey will be 7 at the beginning of December, and for the last three years he's had to do things separately from his brother, which is unlike anything he's used to seeing. All the other kids he knows get to have regular celebrations and do all kinds of fun things with their families. But he doesn't complain. He gets sad sometimes, and sometimes he acts out, but he's also a 7 year old boy and they just do that. Jeffrey just has an extra reason to behave that way sometimes.
Jeffrey is the most empathetic child I have ever seen. He gets so upset when Jaxson is inpatient, he cannot stand to have the family separated even if we are close by. He's so smart, and silly and wild and crazy and all of the things a 7 year old boy should be. He loves his brother so much and will do anything to help keep him happy! God could not have given us two more perfect children. I want to find a way to show Jeffrey just how much he's loved and appreciated, but it's not easy at his age. Sometimes nothing is enough, and that's normal for a lot of children. So we do our best, but we never feel like it's enough to compensate for everything he's had to go through.
Not only is Jeffrey affected, but Jayson and I are too. I am the one who typically stays with Jax for a variety of reasons, so I miss out on a lot of fun things with Jeffrey. But we do try to take turns, so sometimes it's Jayson that misses out. I had to quit my job and stay home with Jax because of his health issues, and although now I'm working from home, I don't get the breaks I did before. Jayson has had to deal with numerous employers who refused to understand and allow him time off when he needed it (his current job has been great, except for one incident). We do not have the financial means to give our children the things that they want, and sometimes the things that they need. Jayson and I will go without eating if we have to, to make sure that Jeffrey has food and Jaxson has diapers. We live in a not so nice area of town because we can't afford to live anywhere else. Things are on the upswing now, but it's taken a long time to get where we are.
The impact of a medical diagnosis on a child affects everyone in the household. People always say we're so strong and that Jaxson is the toughest kid they know, but let me tell you something. Jeffrey is tougher than Jaxson. He may act like a sensitive, whiny brat at times, but all kids do. Jeffrey has more mental strength than any kid his age should have, and he's learning to control his emotions already which makes me sad. We would love for our boys to have some semblance of normalcy, like a family with "typical" children. We will never have that. Jayson and I, we are fine, we get it and we will do whatever it takes to care for our kids. But Jeffrey deserves so much more.
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