Cal’s fight against vasculitis & heart failure

10/04/2026

Six months ago…but at the same time it feels like 6 weeks ago…

It has been half a year since Calvin was intubated and on life support. He was so heavily sedated he couldn’t move. He couldn’t even make a sound. When they did start to wean off sedation watching him “silent cry” was almost unbearable. I know that probably doesn’t make sense to most but if you’re in health care or have had a child intubated before you know what I’m talking about.

You just hold your child and pray your hardest to just to hear their voice… to hear them say anything at all.

Now today…

Today he’s full of life, chattering away, proudly telling me what farm animals say. (His favorite are chickens-he’s obsessed tbh)

Today his voice fills the room in a way I once begged for. The same voice I begged to hear is now constant, playful, and LOUD.

I don’t take a single sound for granted. Every word, every silly noise, every tiny conversation feels like a miracle we once prayed for. 🎈

10/04/2026

Calvin has had a tremendous appetite lately. Look how happy he was with this ice cream today 🤣🤭

It’s so nice seeing him enjoy food now.

Before we found out he was in late stage heart failure it was a struggle every single day to get him to eat or drink ANYTHING. He only wanted to nurse. We soon found out the reason.

In heart failure, the body often prioritizes survival over hunger so the body shifts into a stress mode:

•Blood flow is directed to vital organs (brain, heart)
•Less goes to the digestive system

This suppresses hunger signals. He wasn’t eating because his body was protecting itself. Its main focus was his vital organs. Not his stomach. 😔

07/04/2026

Our hearts are with you Meilizze and Andy
💙💙💙💙💙💙💙💙💙

Andy & myself would first like to start off my thanking everyone for all … Meilizze Feliciano needs your support for Honoring Dallas with a Beautiful Service

07/04/2026

He finds the light,
And we follow His lead.

Yesterday, his optometrist took photos of his eyes and noticed an increase in small veins in his left eye. This could either be congenital—part of his natural anatomy—or a sign of retinopathy related to his vasculitis. He has now been referred to a retina specialist for further evaluation.

So, now we wait until July for more answers.

06/04/2026

🎶Here comes Calvin tubie tail 🎶….

Cruising back to Duke today 💨

Eye appointment
&
Hematology

Next infusion isn’t until the end of the month so hopefully no pokes from hematology and we can wait for bloodwork until then.

05/04/2026

Happy Easter ✝️

Some bunny pulled his NG out at bath time so here’s a rare pic of tube free Cal

04/04/2026

Last year we couldn’t stay outside too long for fear of a no see um or mosquito biting him, or him getting a scrape while crawling and triggering a PG (pyoderma gangrenosum) lesion… now we can’t get him inside.

He’s still on a heavy dose of steroids which has been helping to keep the PG at bay on top of his vasculitis but I’m hopeful his monthly infliximab infusions will help keep the PG in remission.

It’s so nice seeing him enjoy life and getting to do “normal” toddler stuff. He absolutely LOVES the outdoors.

29/03/2026

I know I explained the full story about the significance of Calvin and his lolly pop several posts ago so you might have to scroll back.

This is the lolly pop one one his sweet nurses in Wilmington stuck in my bag before Calvin was life flighted to Duke back in September. She stopped at the gift shop before her shift and snagged this for him. She told me to make sure he gets his lolly pop when he’s feeling better.

Well guess who got to march all over the yard today with his GIANT lolly 🥹

Much deserved. He earned it.

Thank you ❤️🍭

26/03/2026

He sure does look handsome in red.

Apparently the heart disease ribbon and vasculitis ribbon are both red.

Fitting for Calvin 🎈

Infliximab #6 tomorrow
Bright and early.

24/03/2026

If you’re in the thick of watching your little one on TPN and lipids or just starting PO feeds, I see you

I remember when we first got the okay to try PO feeds. It felt like we had been on TPN and lipids forever. Finding a sippy cup with a flow that was “just right” for Cal felt impossible. Even 1 mL of water would make him vomit for minutes. There was barely anything in his belly, so it turned into violent dry heaving. I’d rub his back, trying to comfort him, while watching his heart rate climb into the 170s–180s.

I kept thinking…
“Will he ever be able to eat or drink again?”
“Is this normal?”
“How do I fix this?”

It was weeks and weeks of grabbing the bucket, adjusting feeds, and comforting him through vomiting—whether it was from a tiny sip of water or increasing his NG feed rate. Nighttime continuous feeds were especially hard. His little belly just couldn’t tolerate it at first.

But then… one day, it stopped.

He stopped throwing up. He started keeping things down. That never-ending cycle of feeds and vomiting finally broke. Slowly, he began eating solids, little by little. That’s when the real healing started.

If you’re here right now—don’t give up.
Go slow. Adjust the feeds. Try different rates. Try ALL the ni***es and sippy cups. Sometimes the flow is just too much, too soon.

Like you, I once thought, will we ever get there? You will eventually find what works for your little one and it will all be okay 🎈

21/03/2026

Be honest.
When’s the last time you enjoyed a popsicle on a porch?

19/03/2026

We made it home from Duke yesterday. The night of cytoxan was a little rough. His appetite hasn’t been the best since his maxillary canines and molars are all popping in at once. This was the first time he experienced vomiting after a chemo infusion. It was a long night…

We were nervous we would have to bring him back to Duke in the morning if we couldn’t get his nausea under control because he cannot puke up his heart failure medication.

Thankfully by morning his papa went and picked up some silk almond milk the hotel had at the breakfast downstairs and we were able to feed him that through the NG and he kept it down. Meds were administered 2 at time every 30 min and he had no issues.

On the way home we stopped and got Calvin a slice of pizza ( one of his fav foods ) hoping and praying he would take the bait. He did! He ate about 1/4 of the pizza and then came home that night and ate an egg, spaghetti, blueberries, and a bit of pancake.

He’s back to is old self. Refusing to nap because he can’t miss out on a thing and getting into all the mischief. Im confident his teeth have finally erupted enough that they aren’t causing him as much pain anymore.

His cardiologist dropped his lasix completely so we will just monitor him for any cough, fluid retention, breathing changes, and wet diapers.

Rheumatology gave the ok to drop his prednisolone another ml so he’s down to just 3ml a day.

We travel back to Duke next Thursday for another early morning infusion on Friday. This will be his 6th infliximab infusion. This is the infusion we will continue with long term to keep his vasculitis under control.

June time frame is when rheumatology would like another MRI.

✨The positives from his echo✨

💙 His flow acceleration in the descending aorta, peak gradient is now 22mmHg (last month it was 35mmHg and the month before it was 50 something)

💙 There is additional flow noted adjacent to his left coronary cusp and anterior to the left main coronary artery which may represent collateral flow🙏🏽 his body could be creating collaterals where he had severe stenosis (near atresia) of the left main coronary artery back in September

❤️Mildly dilated left ventricle with moderate systolic dysfunction, stable LV 3D EF 42% GLS -8.1

When he was first hospitalized in September his LV (left ventricle) EF (ejection fraction) was down to 18% and his GLS was 4%. That’s considered severely dilated left ventricle and severe systolic dysfunction- late stage heart failure.