Cal’s fight against vasculitis & heart failure

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

❗️Update: cardiology was able to get back to me and is ok with whatever his pediatrician thinks he needs so after speaki...
10/21/2026

❗️Update: cardiology was able to get back to me and is ok with whatever his pediatrician thinks he needs so after speaking with his pediatrician we are going to do 3 days back on 5ml of prednisolone and see if that gives him the boost he needs to kick this along with his nebulizer treatments.

Thank you for the prayers it’s been a long day so far to say the least.

Rsv, flu, Covid test was negative but we ended up needing a chest xray to rule out pneumonia because he’s wheezing and congested sounding and it came back as bronchiolitis.

Rheumatology is totally fine with whatever the pediatrician recommends, which is a nebulizer treatment that he HATES with a passion every 4 hours.

We still haven’t heard back from his heart failure team so not sure what they will recommend. So as for now the plan is to keep a close eye on his, lots of fluids, and breathing treatments around the clock. It’s not like we’ve been sleeping anyways 😴

Yes, that’s the actual size of the bag for all of Cal’s meds.

Cal is still battling his fever. He’s still drinking fluids so that’s a plus but his appetite is no longer there. He pla...
10/21/2026

Cal is still battling his fever. He’s still drinking fluids so that’s a plus but his appetite is no longer there.

He played outside yesterday for a good hour so he got some good vitamin D.

I’m waiting for his pediatrician office to open so I can hopefully get him seen today or tomorrow. The only thing keeping his fever at bay right now is Tylenol around the clock. His cough is getting worse.

Oct 20, 2025 was the much anticipated day for extubation. Unfortunately it didnt go as planned. Randomly, the day of, Ca...
10/20/2026

Oct 20, 2025 was the much anticipated day for extubation. Unfortunately it didnt go as planned. Randomly, the day of, Cal surprised us with a rapid response scare. I don’t remember exactly what happened but I know his heart did something weird and he desatted. Very quick but enough to make his team hold off to give his body one more day to recover.

We were definitely shaken up but grateful it wasn’t more serious and that they would be able to “try again tomorrow.”

Current day update:

Cal is unfortunately still battling the bug his big sisters brought home from school. Last night was rough. He was so restless and battled a fever all night. We stayed on top of it with Tylenol so it never got over 101.4. His cough is pretty wet sounding so it seems to be breaking up.

We can’t just let his body try to fight on its own because the medications (infliximab and methotrexate) he is on wipes out his immune system. He doesn’t have much fight in him and fevers make his body/heart work harder and we don’t want that extra strain on his heart. Tylenol helps bring the fever down so his body can rest and just focus on getting well.

This is why any little sniffle or cough that comes into our house is stressful. It’s not something a little dude with a compromised immune system can just fight off like his sisters can with their typical immune systems.

Rheumatology said to hold off on the methotrexate for 24-48 hours if he’s got a fever so we will do just that.

Keep Cal pal in your prayers he can rest and get well quickly.

My middle baby stayed home from school today. Calvin’s developed a 101.2 fever since waking from his morning nap. Please...
10/19/2026

My middle baby stayed home from school today.

Calvin’s developed a 101.2 fever since waking from his morning nap.

Please say an extra prayer he can fight this off quickly. We were told to hold off on his methotrexate until he’s fever free 24-48hrs.

Both of his sisters were sick over the weekend so I knew his chances were high…

Suddenly your nervous system is back in fight or flight. Go bags are {always} packed.Mental math is happening.Tensions a...
10/18/2026

Suddenly your nervous system is back in fight or flight.

Go bags are {always} packed.

Mental math is happening.

Tensions are high-er.

Cal got to experience his first trunk or treat last night. He rawred and danced his way all over the Emerald Isle coast ...
10/17/2026

Cal got to experience his first trunk or treat last night. He rawred and danced his way all over the Emerald Isle coast guard station. He even got to check out the inside of an ambulance -not as a patient.

Unfortunately his big sisters woke up battling a chest cold of some sort. They are resting on the couch watching a movie together now. Vitamins have been given.

Praying Cal is strong enough to keep this one at bay and the girls fight it off with no issues. Fall is always a scary time for us when it comes to him getting hospitalized.

I’m going to message his rheumatologist today to see if we should skip his methotrexate tomorrow to give him a chance of having an immune system to fight this off if he does catch it.

Calvin’s face before he devoured his entire kids pizza and some of my fries. We go here so often they know his order. He...
10/16/2026

Calvin’s face before he devoured his entire kids pizza and some of my fries.

We go here so often they know his order. He’s been eating here since he was in the womb 🤣

He’s finally hit the marker on the growth curves for height and weight. He’s always been less than 1%.

As of last week for height he’s reached the 2% for his age and weight he’s a little over 20%.

Let’s grow Cal!
Tiny but feisty…

10/14/2026

I was not at his appointments so I’m going by what my husband relayed about the last 2 days.

They were LONG. Calvin is getting increasingly more agitated with his appointments. Hes also getting bigger and stronger so that adds to the battle. He’s just over being poked, prodded, held down. Thankfully he’s pretty quick to calm down once it’s all done though.

Rheumatology was very happy with how his bloodwork looked with him being off steroids for some time now. His platelets are pretty high but they are always high so that’s nothing new. Just something they keep an eye on.

They want to get another CT scan in Dec or January for his 1 year comparison. I’m hoping no anesthesia for this one since it’s typically a quick scan but idk with how wild Cal is lately. It’s gunna be tricky.

His eye appointment was the hardest. They have to take very detailed pictures of the vessels in his eyes and he puts up a big fight.

Last visit the retina specialist wanted to see him back every 6-8 weeks but this visit she said they can space out visits further so we won’t have to do this again until Feb.

My husband said the office is extremely busy and she was talking very fast so he didn’t really get a lot of what she said. He thinks she said something about being “stable.” Nothing has popped up in mychart so I’m not sure either.

The biggest response over the last couple of days was hearing how BIG Cal has gotten. Not just his medical team but also from the staff he’s seen at the hotel we stay at every month. They have also watched him grow and cheer him on every time they see him. Hearing that feedback is so heartwarming/reassuring.

Sorry bud. No coffee for you.Day 2 at Duke with Papa. I’ll update as I hear more on how things go.
10/13/2026

Sorry bud. No coffee for you.

Day 2 at Duke with Papa.

I’ll update as I hear more on how things go.

Getting his October infusion done with Papa today. Followed up with an ultrasound of his thigh so we can figure out what...
10/12/2026

Getting his October infusion done with Papa today. Followed up with an ultrasound of his thigh so we can figure out what that mystery bump is.

Tomorrow is a rheumatology appointment and another visit with the retina specialist.

It really makes it so much easier that his Drs understand and care that we drive so far for his appointments so they do their best to schedule them all at the same time frame.

4 appointments in 2 days ✨

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2301 Erwin Rd
Durham, NC
27705

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