Systemic Capillary Leak Syndrome

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Systemic Capillary Leak Syndrome
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Any treatment/medication helping Capillary Leak Syndrome? #SystemicCapillaryLeakSyndrome #Immunotherapy #opdivo #stage4melanoma


I keep hoping the next treatment my oncologist and rheumatologist start me on will get rid of this swelling. It’s taken over my life. I tried IVIG- which semi brought down swelling for a few days. It was really difficult to get approved by insurance. I’m now on Anakinra, which hasn’t given any relief yet.

My Capillary Leak Syndrome started over a year ago which led to me being taken off immunotherapy and being hospitalized for sepsis. I’m looking for anyone going through this awful disease. Please get back to me!


It’s Okay to Grieve In “Weird” ways defines “Grieve” as;

1. To feel grief or great sorrow

2. To distress mentally; cause to to feel grief or sorrow

As a Mom of a child with multiple chronic and life altering conditions, I’ve learned that everyone grieves differently, there is no right/wrong way to mentally process your grief, and it’s perfectly normal to grieve the life you “expected” to have.

Our Dallas Jane was born via planned C-Section, full term and full of surprises. (We thought our big surprise was going to be finding out the gender of our last baby.) We knew instantly, something was wrong. She only let out a tiny squeak, other than that, she was silent. She was struggling to breathe. Within an hour of her birth, we were told, “Your daughter is incredibly sick. We don’t think she is going to make it. We’ve done all we can do for her.” Hearing that a hospital with a level 4 NICU can’t help your newborn, I was angry. I yelled at them, “What do you mean you’ve done all you can do? People purposefully choose this hospital for your NICU!” i began to grieve. How do we tell our older two kids who are anxiously awaiting the news, “Brother or Sister” that they can’t meet their new sibling in person because she was intubated, on an oscillating ventilator, with a chest tube just minutes after birth? This is definitely not what we had planned. This isn’t what we discussed. We had a photographer waiting with our family to catch the moment they met their new sister, we had to send her home. She wasn’t allowed in the NICU. Our other children weren’t allowed in the NICU. Knowing we were on borrowed time, we called for a priest at midnight. We wanted her baptized. Watching him bless sterile nursery water, watching my husband cry, thinking, this isn’t how this was supposed to go. Her Godparents aren’t here. Her siblings aren’t here. This isn’t fair! My grief took over, I began taking pictures like a mad woman. Every body part, every detail of her. If I could’ve bottled up her scent, I would’ve. I wanted any and everything she touched. She was declining quickly. Transport came and rushed her to the closest Children’s Hospital with ECMO machines. Just like that, my new baby and my husband were gone. I was left alone with my own thoughts and fears, while attempting to pump colostrum for a baby who may never eat it. Right before she was placed on ECMO, the PICU allowed my husband to quickly let our bigs meet their sister. She was already under sedation for the procedure. Not being there when my bigs saw their new baby for the first time was devastating.; but not as devastating as being 45 minutes away in another hospital all alone when you are being told that A. They fully expected her to pass away during transport and B. They aren’t sure she will survive the procedure to be placed on ECMO. I left my hospital 24 hours after my C-Section because Damn it, if my child was going to die, she wouldn’t leave this world without her Mama letting her know how much I loved her.

This set off a chain of events for her first six months of life. Coding, rare diagnoses, multiple chest tubes, heart drain, internal bleeding, reoccurring chylothorax, systemic capillary leak syndrome, immunodeficiency treatments, emergent procedures. Once again, I took EVERYTHING! If it touched my daughter in any way, I was taking it. After one emergent life saving experience, when she was finally stable, we were allowed in to see her. I watched as a nurse took a bloody blanket and placed it in the hazard container. After she walked out, I pulled it out of the bag and placed it in my back pack. I couldn’t explain it. She wasn’t out of the woods and we were told she could pass at any moment, I HAD to have her bloody blanket. I refused to wash it. I was told that was “weird” and “gross”. To me, it was a piece of my baby. A baby that I was being told may never come home.

When Dallas Jane was 23 days old, she was stable enough for us to hold her for the first time. It took 5 people, 30 minutes to move her one foot. She was still on the ventilator and hooked to 14 pumps. This was definitely NOT how I envisioned holding my baby for the first time. We held her two more times before she got trached at 9 weeks old. We then had to wait a few more weeks before we could hold her again.

After 6 months in the hospital, she came home for the first time. She was only home 6 hours before a negligent home health nurse essentially let her suffocate, almost to death. When you see your child limp and gray, and you have to start performing CPR, terrifying doesn’t even begin to describe it. This was NOT supposed to happen. She just came home for the first time. That put her back in the PICU another 3 weeks.

Fast forward, she’s 2. She’s had 20 hospitalizations. She has had multiple new diagnoses. We’ve almost lost her so many times. Our last big scare came last month when she seized for over 30 minutes. She was unresponsive for nearly 7 hours. I once again took pictures. As many as I could. We thought for sure, this was it. I wanted to make sure I took pictures of her soft bouncy curls, her perfect little hands, her pouty little lips. I can’t explain it but, I HAD to. Thank God she came out of that super scary ordeal miraculously unscathed. She’s a miracle!! She’s a fighter!!

I reached out for help. My Dr. is helping me process Grief, PTSD, depression, anxiety, and panic attacks. Grieving the way that feels right for me, requires zero judgment from others. Others may not understand. And I’m okay with that.


Never Give Up

Never Give Up

Little girl, how you’ve changed our world. You have made me see through different eyes, listen with intense intent, pray for, believed in, witnessed miracles. You have brought out a unique tenderness in me that I didn’t know existed; all while unleashing a beast of a ferocious, untamed, almost insane protectiveness, and INABILITY to give up, take no for answer, let some Dr.s fears hold you back, and deal with people’s disgusting looks, uninvited judgements and advice. You taught me to never give up.

From the moment you were born, they said you wouldn’t survive. You were too sick to live. How? How do you say goodbye to someone you’ve loved their whole life and only laid eyes on once?! My heart couldn’t/wouldn’t understand. The fight of your life and ours had just begun. Your start at life was unfair, incredibly painful, and devastating at a level I never knew existed. ECMO had MANY possible devastating, life altering side effects but, it could save your life; we weren’t giving up. 3 chest tubes, 1 heart drain, coding, systemic capillary leak syndrome, reoccurring chylothorax, tracheostomy, g-tube, 24hour ventilator dependent….. At one time it was thought you would be added to the donor list in need of new kidneys and liver. Immediately I said, “Test me! Right now. Test me”. I was ready to get your brother and sister up to the hospital, explain what I needed to do and say Goodbye to the first 2 miracles to enter my life. Absolutely no doubt, I was ready. Words can’t describe the agony of watching you struggle. Watching you hurt. There was a part of my heart that said, “April, you’re being selfish. YOU are making her suffer.” And I began to question myself. Am I prolonging your suffering because I CANT imagine my life without you in it?

Then I would be reminded that your Dr.s, specialists, therapists, nurses, etc weren’t giving up. You had the brightest, most inventive, intelligent minds, researching, sleeping in your room to be right there in case of emergencies, coming in to your room in the middle of the night (in their nights off), calling all over the country and abroad to find experimental drugs that had yet been placed on the market because your many curiosities intrigued, at times stumped, and all out frustrated the hell out of them but, THEY NEVER GAVE UP.

You, little warrior unicorn, YOU never gave up! The fight and the feistiness, the attitude and grit. Regardless of the hell that was thrown at you, you taught us all what determination looked like.

Whither it be 2nd or 3rd opinions, fighting with the medical supply company to get the supplies you NEED, arguing with Dr.’s who won’t listen, driving as far as we need to have the correct specialists examine you, 16 hospitalizations/procedures in 24 months, looking into going back to school to get an Associate’s in American Sign Language, watching and studying hours of ASL videos in preparation of the chance (because we hear from others that it is) that your hearing loss COULD continue to get worse and you could POSSIBLY loose all hearing and become profoundly deaf. We will be ready regardless of the outcome. We will teach your siblings and nurses how to communicate with you. (All while praying this isn’t the route you will end up going). We will NEVER GIVE UP. No matter what it takes, no matter what it costs, we will do EVERYTHING we can to give you the live you deserve. One for you to learn, grow, have fun, have friends, and not let your conditions define you

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