Cal’s fight against vasculitis & heart failure

Cal’s fight against vasculitis & heart failure Hi, please read my pinned post

Cal was back at Duke yesterday for his appointment with the retina specialist. Typically they sedate little ones to get ...
08/05/2026

Cal was back at Duke yesterday for his appointment with the retina specialist. Typically they sedate little ones to get the imaging they need but the Dr didn’t feel comfortable sedating him given his health history so they swaddled him and he FOUGHT like a grown man. Thankfully my husband was there to hold him. I stayed home for the first time EVER for one of his medical appointments so I could take my daughter to her dance class. It was weird but he updated me constantly throughout the day which helped. I also got one and one time with my middle baby girl so that was nice. We never get one on one time anymore.

Cal’s eyes haven’t worsened any since his last visit in April when they took picture of his eyes. They want to closely monitor him though for any changes in his blood vessels so we will now be going every 10 weeks for imaging of his eyeballs.

I’m hoping it works out that my husband can go to his retina appointments so he can be there to hold him for the imaging. Little dude is a FIGHTER through and through.

I buy a lot of Cal’s clothes secondhand on Mercari. One thing that’s made his echos so much easier is dressing him in bu...
08/04/2026

I buy a lot of Cal’s clothes secondhand on Mercari. One thing that’s made his echos so much easier is dressing him in button-down shirts. He’s usually asleep during his echos, and being able to simply unbutton his shirt instead of pulling it over his head or taking it off completely helps keep him asleep and calm. It makes the scan much less stressful and gives the team the best chance of getting accurate images.

The other night I was scrolling Mercari and adding a few button down shirts to my cart for Cal’s future echos. I came across a seller selling the sweetest little blue button down in his size and bought it.

It arrived yesterday and when I opened the package I found a handwritten note tied with a blue bow and a little wooden HEART that said, “Thank you.” In the card the seller explained that she likes to include a small extra gift with every purchase and said I could donate it or resell it if it wasn’t something we could use. She had no idea why I was buying that little blue shirt….

Thankfully I was able to send her a direct message to thank her for her kindness.

I just hope she knows that her thoughtfulness meant so much more than she could have imagined. Sometimes the smallest acts of kindness have the biggest impact, especially when you have no idea what someone else is carrying.

Something as simple as taking the kids to the bathroom at Walmart and accidentally walking down the “fan aisle” can be a...
08/03/2026

Something as simple as taking the kids to the bathroom at Walmart and accidentally walking down the “fan aisle” can be a trigger. Noted.

Cal spent weeks on the arctic sun trying to bring his temperature down. He never shivered. He wanted the coldness. Getting him off that machine was such a huge win. I didn’t think we ever would.

08/02/2026

We have 3 children.

All 3 used the same exact crib.

Guess who is the first to escape said crib?

Needless to say, he officially has a toddler bed now…

If there’s a WILL there’s a WAY with this boy 😅

07/30/2026

Vascular update:

Good news and pray about it news…

Good news! NO surgery needed in the immediate future. His blood flow to his legs looks good and everything seems to be about to stable. His vascular surgeon gave the final ok for us to go down to just one blood thinner. So no more plavix! He still has the active inflammation in his aorta so they will continue watching that smoldering fire.

He is currently taking :
carvedilol (am/pm), aspirin, Farxiga, a tiny dose of prednisolone, and spirolactone

He is still battling a little head/chest cold and last night had a rough night. He still can’t really tell us what hurts but I think it was a head ache. We’ve had some crazy storms on top of this congestion and I, myself, felt it so bad yesterday I ended up taking ibuprofen. I never get headaches so I know it’s pressures messing with me. We gave Calvin some Tylenol after endless calming attempts (and a total sleep deprived “DUH” moment) and he was asleep within 15 min. So I’m really hoping he’s just dealing with the same head congestion discomfort.

Pray about it news is his arms have turbulent blood flow. But…good news is he isn’t having an issues with his hands. He’s got one heck of an arm on him throwing things left and right, he’s currently ambidextrous and sometimes colors with both hands at the same time 🤣, he rides his bike like a maniac, PINCHES worse than a blue crab, and even does assisted hand stands with his sisters. Like I said, we will pray about this. And pray his body continues to form collaterals. Collaterals have been his saving grace.

His vascular surgeon was ultimately very pleased with where he is from where he started. I think that goes without saying everyone is really scratching their heads at his recovery trend. She feels so strongly about this that she is ok with scheduling a follow up in a YEAR from now. Any extra imaging will be at his rheumatologists requests 🥹

Thank you again if you made it to the end of this post. Just shows how invested you are in little man’s come back. Please continue the prayers.

His next Duke visit is in a couple days to a retina specialist. He needs more imaging done on his eyes to make sure the vasculitis isn’t affecting his vision. His last visit showed a possibility of inflammation but it could also be his anatomy. More imaging will give them a clearer answer.

This is how Calvin looked the day I brought him to the pediatrician because he was on and off hyperventilating. I was to...
07/28/2026

This is how Calvin looked the day I brought him to the pediatrician because he was on and off hyperventilating. I was told his lungs sounded fine and he probably just had a bo**er in his nose he was playing with. I asked specifically for his oxygen levels to be checked but I was told their pulse ox didn’t work right and it wasn’t going to give us an accurate reading anyways. We were ultimately sent home. Once again I felt like a hypochondriac. No answers.

A few weeks later he was being life flighted in end stage heart failure.

TRUST YOUR MOM INSTINCTS.

AND health PROFESSIONALS….LISTEN TO PARENTS…

07/28/2026

We finally get to have our video call with vascular surgery today about Cal’s MRI results from last month as well as his ultrasound results from last week.

Please keep him in your prayers we get some good news today. We want stable or better. 🙏🏽

Also if you could just say an extra prayer little guy keeps fighting this bug we both caught.

I ended up reaching out to his rheumatologist and we decided it would be best to skip his methotrexate dose this week so his body can build up some immune system to fight this off. His symptoms started about 3 days ago. Just a cough and runny nose. No fever. He still has a great appetite and is drinking lots of fluids. The cough just sounds gravely and wet but it’s breaking up.

I’m randomly “power cupping” his back like we did when he was extubated to help break up the gunk in his lungs. He loves it today just as much as he loved it then. No really..he really does like it.

🎈

07/21/2026

Calvin’s vascular surgery ultrasound appointment went much smoother than I ever expected this morning. His ultrasound tech even finished with time to spare because Calvin fell asleep! All I had to do was ease his mind and let him know she wasn’t the vascular access team looking for a vein to place an IV. She was only going to be doing a scan. Within 10min of telling him no pokes he stopped fighting us and drifted off to sleep. 🥹 He’s just so used to being poked.

No updates. His Dr wasn’t available to go over results today so we will have to wait until next week and have a virtual meeting to discuss.

Splash first, questions later2 weeks NG free 10 months PG lesion free 🤯 A year ago there’s a zero percent chance I would...
07/20/2026

Splash first, questions later

2 weeks NG free
10 months PG lesion free 🤯

A year ago there’s a zero percent chance I would be letting him do this. Cuts, scrapes, bug bites…everything triggered new lesions.

07/16/2026

Update on bloodwork from 7-15

Good and OK news

Ok news- so I just spoke with Cal’s rheumatologist. Overall she is happy with his labs but the one she does want to keep an eye on is his lymphocyte count (a type of WBC) . Hes at a 7 and the green zone is 39-61 so he’s pretty low.
We will just have to keep an eye that he doesn’t develop any illness symptoms and keep him away from anyone sick. So basically the norm for an immunocompromised toddler.

So if you’re sick or been sick recently and you see us out give me a heads up to not get too close. I try my best to keep his life as normal as possible but I’m not taking chances landing him in the hospital again.

He’s just more susceptible to catching something right now with these numbers being so low his little body would have a harder time fighting a bug.

If he does develop symptoms we will skip his methotrexate dose to help his body build back some immune system. 🫶🏽

Ok the good news!

Inflammation looks good we can officially drop his prednisolone dose down to .6ml.
Ok a wins a win!

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2301 Erwin Rd
Durham, NC
27705

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