#heterotaxy

[y2ksnowglobe]

I can never get over the name of my condition being Heterotaxy Syndrome. Y'all fully just gave up didn’t you. Just looked at us and said, "wow, the arrangement (taxis) of your insides sure are different (hetero), but beyond that y'all are pretty different, even from each other, so... yeah... heterotaxy, we can make that work, right? That's specific enough. That's a description that reveals so much about what you have going on in a totally specific and informative way."

[darkandnegative]

Happy birthday, Eternity

Is there a parent guide book on how to do this. Is there a real club for “a parent should never burry a child.” She was cremated, but still.

My heart and soul hurt and long for people who have left this world behind.

Is there a cheat code?

[runningtowardsfitness]

Some days are PICU days.

[asylvia1979]

Having learned it could be Heterotaxy was interesting because in some cases it affects the heart and your organs mirror your heart. The placement of CJs heart was to the right and it had all the pieces but they weren’t In the right spot... (more on that later) we had routine check ups and only a few bumps in the road.. never with CJ he was happy as a clam and safe in utero. I had an episode of passing out and blood pressure going nutty. In the end I was put on partial leave at work because my blood pressure was not good.

We planned on a c-section October 14th 2008... normal delivery wasn’t an option because the plan was CJ May need to go right to surgery.

Well CJ was an amazing baby. He surprised the whole medical team... we had quite the crew in the operating room. CJ seemed to adapt to his condition meaning he was born at 10 pounds .. was in the nicu because of his heart condition. He was able to stay on room air and just monitored. His cardiology team was beyond impressed. Now his condition is a 1 In 10,000 and no one knows what causes it but it does happen in the first 8 weeks...I learned to be a mama bear in this time. CJs condition was complex as the nicu team said they had never seen a complex case such as this and would need to go into the medical books to find such a case. This wouldn’t be the first time or the last time we heard this...So many questions asked of our family histories and medical back ground. My one fear was did I cause it because I was very sick right after we found out I was pregnant with a bad case of bronchitis and a fever... I was assured that wasn’t the cause. They wanted to do genetic testing and even after saying no I found them visiting CJ in the nicu... nope not gonna have it because in the end it wasn’t going to change his condition . We did have certain tests run. In the end he had Heterotaxy with dextrocardia, double outlet right ventricle, complete attioventricular canal, mild pulmonary stenosis, midline liver, midline stomach, asplenia and malrotation of the intestine. Like I said complex! He would be on prophylactic antibiotics for life because he didn’t have a spleen...(yes as babies and children you need one because they help with immunity..who knew ?!) As I said your organs mirror your heart so because his heart was on the right side versus the middle of chest his stomach and liver also shifted to the right... who even knew these these things were possible?! The exciting day came where we were released from the hospital... with lots of follow up appointments.

More tomorrow ...

[asylvia1979]

Happy Friday.... ok I left off with the what if’s...

We found out we would have to have a level 2 to get a better picture of my sons heart... we went in so filled with hope. Sadly we got word his heart was not developed the right way... they pulled my husband and ...I sat in a meeting room where they stated asking questions about health history...talking about what it could be.. choices we may have to make...I was distraught and they lacked a level of compassion I would expect. They even asked us to leave through a back door instead of regular waiting room because I was crying... ummm nope I walked out that main door tears and all. At home we had to tell our families... one being more understanding then the other. More on that later...

My parents jumped to action and somehow my mom knew a cardiac ICU nurse for Children’s a hospital Boston.... through her we found my unborn child’s cardiologist and somehow I ended up with the head of maternal fetal medicine at Brigham And Woman’s.

All I can say is wow!! The care that followed was incredible and with heart and empathy. We talked all things it could be and honestly in those remaining months of pregnancy we learned more about fetal development and heart development then most non doctor people learn in their lifetime. One word that came out was Heterotaxy ... now heterotaxy can take many shapes and forms on how it affects the child and it happens in utero and how the baby develops. Never had I heard this word but what I should have done was listen to the cardiologist when he said never search medical terms on line because everyone’s cases are different.

What I did learn.... was 1. I should have listened and

2. Heterotaxy is a 1 in 10,000 condintion.

The what if’s had officially taken over.... many many appointments for me and the baby followed.....

Until tomorrow ...

[asylvia1979]

I’ve debated about blogging for sometime... I am a mom, a wife..a daughter..there is a lot more to me than that but we will start with that. Life has thrown me more curveballs in the last 12 years maybe more and I’m not even sure where to begin but if my life or something like it can help or even make one person realize they aren’t alone in there own craziness or curve balls that life throws them then this blog is for them...

I could start at the beginning but really that seems like a lifetime ago... I mean ok I’m not that old but here’s the thing... I’m to young to be old and to old to be young.. so I guess I’m somewhere in between.

I’ve always been a writer at heart.. stories, journals, diaries as a kid.

I say 12 years because that’s when my world was turned upside down. My husband and I found out we were pregnant... we were so excited!! Planning the babies room... furniture shopping ... we were so excited to find out we were having a boy!

The first ultra sounds were good. My pregnancy was normal besides having awful morning sickness that was more like all day sickness. At 18 weeks we had an ultra sound and my mom came this time. The tech just kept going over the same area and not talking.

Now I am one who knows when something isnt right..and this just wasn’t normal. She finally said I can’t see what we need to with his heart. My own heart broke tears flowed and panic had set in. My mom being my mom was like well we need a doctor to come in and tell us what this means because it’s Friday and my daughter can’t wait all weekend to know what that means. She was so calm and me well I was a disaster... I had so many thoughts going through my head and I had to call my husband....

After a bit of time a doctor did come in and said we can’t see what we need to with your sons heart... so we need further tests.. meaning a level 2 ultra sound.

Again my mind a fury of thoughts and panic.

My thought being this..I had always wanted to be a mom and You get in your mind all the movies and shows that show having a baby with no problems all sunshine and rainbows but in the real world that’s just not the case...

More tomorrow....

[a2zmedicalnote]

What is situs solitus?

In situs solitus the viscera are in their normal positions (stomach and spleen on the left, liver on the right), the 3-lobed right lung is on the right, and the 2-lobed left lung on the left;the right atrium is on the right, and the left atrium is on the left. 

What is situs inversus?

The mirror image of situs solitus, in which there is a reversal of placement of the abdominal and thoracic structures resulting in a left-sided liver, right-sided stomach, left-sided IVC, right atria on the left side, and the left atria on the right side.  With this arrangement, concordance among organs, vessels, and cardiac components is generally conserved.

HETEROTAXY SYNDROMES

medical notes, pediatric notes, endocrine notes, mrcpch AKP, mrcpch TAS USMLE, MCQs, journal summaries,powerpoint, growth chart, books ,nels

[carsonssquad]

Today marks 5 years since Carson’s last major open heart surgery, the Fontan procedure. You know I have a story, but it is about these current photos....❤️ We have an area of river rocks in our yard where Carson often plays. The other day he used his little shovel to create a “pond” and he built up the middle with a pile of rocks. He came inside to get me and as he spoke his eyes were sparkling with joy. He told me he wanted to show me his “God Pond” and this is where he is going to talk to God whenever he wants. I don’t talk much about this because it is so special and personal, but our little boy has talked to me about his “talks with God” on a few occasions. What is so incredible about this is that he has done this since he could talk. He started talking to us about God before we ever taught him about who God is to people. Whatever is in his soul it is something really beautiful. This boy loves animals, outdoors, nurturing things, and he appreciates serenity. Cheers to 5 years!!! We are fortunate to celebrate another year with his blood flowing passively instead of being pumped to his body. Isn’t that incredible!!!❤️❤️❤️❤️ #heartwarrior #chd #stayhome #family #heterotaxy #staysafe https://www.instagram.com/p/B_n1tE5He53/?igshid=7tdbkao7c1li