Tough Like Tuff

Yesterday, Tuff had his 6th embolization surgery, and just like the strong little warrior he is, he came through it with no setbacks.

It was a long surgery this time, and I still don’t have all of the updates, but I wanted to share how he’s doing. From a neuro perspective, he’s doing great. He’s neurologically stable and back to his spunky self and ready to go home.

I’m still waiting to hear from his pulmonary hypertension team. Our biggest hope was that this surgery would finally resolve the cardiac issues caused by his VOGM. I know I’m not a doctor and shouldn’t jump to conclusions, but I did see his echocardiogram results posted in his chart. The report says, “Compared to the previous echocardiogram of 4/30/26, no significant change.” That’s pretty straightforward, and honestly, it’s a little disappointing. At the same time, I’m incredibly grateful that he’s doing well enough to come home. Sometimes progress isn’t as dramatic as we’d hoped, but it doesn’t take away from how far he’s already come.

Yesterday started early. Chris, the kids, and I were up at 2:30 a.m. to make it to Seattle Children’s in time for surgery. I think I’ve managed maybe four hours of sleep total since then, so if this post is all over the place, that’s why.

Once Tuff was extubated around 8:30 last night, it was absolute chaos. This kid is incredibly sensitive to opioids. Because of his reaction to morphine during a previous surgery, they used Dilaudid this time, and somehow it was even worse. Instead of resting, he became completely activated. All night long it felt like we were wrestling a tiny, psychotic baby hulk. It finally wore off about an hour ago, and he’s peacefully asleep for the first time. 😮‍💨

I should probably be sleeping too, but instead I’m anxiously waiting for the okay to pack up and head home. Nothing sounds better than my own bed right now.

His next surgery is scheduled for three months from now. One step at a time, one victory at a time.

Thank you all for continuing to pray for our sweet boy, check in on us, and walk alongside our family. We feel every bit of your love and support. And thank you, God. 🙏🏻

As always… Tough Like Tuff. 💙💪🏻

Here we go. #6 here we come.

God, please take care of our boy.

Tough like Tuff 💙💪🏻

1.5 weeks until surgery #6.

Can’t believe we are this close already, it seems to have snuck up on us because we have been having so much summer fun! 💙

Tough like Tuff 💪🏻💙

We made it! MRI and neurosurg check up today.

Tuff is happy as can be and despite all the things he has been through, he loves the nurses here. 💙💪🏻

We have been busy busy since getting home from the hospital.

Tuff was basically on house arrest until last week when his blood counts and ANC finally came back normal! It felt like forever, so getting that good report added a few years back onto my life. 🤪

Half our house got absolutely taken out by norovirus over Mother’s Day weekend and somehow Tuff skirted by without getting it, which is still beyond me. I am quite literally haunted…
Regardless, his little immune system seems to be doing its job and we are so thankful for that.

We still don’t really have answers as to why he experienced the strange patterns and symptoms he did. More than one doctor has referred to him as a “medical mystery,” which I suppose means he’ll keep us on our toes for life. As hard as the unknowns can be, we are just continuing to truck along one step at a time and be thankful and present.

Next Friday Tuff has another MRI at Seattle Children’s to make sure everything still looks okay with the ventricles in his brain and that nothing is growing or changing. Then his next surgery is scheduled for June 30th.

As always, we are grateful for every prayer, message, check-in, and person rooting for our boy. Praise be to God. He continues to smile through more than most adults ever could. Tougher than most.

As always,

Tough like Tuff 💙💪🏻

Costco shoppers: make sure you round up at check out! 💙🧡

On your next Costco run this month, donate to Seattle Children’s at Washington locations to provide care for kids in your community.

Every donation at the register makes a big change for all kid-kind!

Guess what?

We get to go home!

Tuff’s levels came up! Still not normal but much better than they were! We have quite a bit of outpatient monitoring and protocols to follow but we will take it!

Now we wait for Chris Tibbits to come pick us up.

Tough like Tuff 💙💪🏻

It has been a week. Out of all of our hospital stays, this one has been hard. It’s been up and down and up and down but I think we’re finally landing somewhere a little more stable in terms of a plan and (maybe?) answers.

Let me start from the beginning..ish.

Last Saturday, Tuff’s fontanel swelled…like, really big. We rushed him to Centralia because we’ve always been told that if this ever happens, it’s an emergency and we need to get to the nearest ER immediately. The staff did their best and were gracious with me (even with my intensity), but the reality is that hospital just isn’t equipped to handle a baby with such a complex condition. We got a CT done… and then we waited. And waited. Eventually, we signed papers so we could leave and drive him ourselves to Seattle Children’s rather than wait for an ambulance.

We knew we’d be admitted, so Chris and I threw what we could into the truck and made the drive for what turned into a very long night.

Fast forward a bit, hydrocephalus has now been ruled out more times than I can count. He has neurosurgery, neurology, interventional radiology, and pulmonary hypertension teams all working together on his case. Surgery has been discussed multiple times, but as of now, it’s officially off the table. Phew. Thank you, God.

His fever finally broke Tuesday night, which felt like a huge win. But Tuff likes to keep us on our toes and nothing is ever easy…his labs have been all over the place, especially his ANC (absolute neutrophil count). For those who don’t know, ANC measures the number of infection fighting white blood cells in the body. A normal, person is above 1,500. Tuff’s has dropped from 1,500… to 500… to 100… and the last couple of days it’s been hovering in the 400s. That’s dangerously low.

His other counts have been somewhat okay, but I asked the attending doctor point blank tonight if we’re looking at leukemia. It’s been brought up throughout the week. She said no but she is consulting hematology because of how low his numbers are. If this isn’t being caused by some kind of virus (and he has tested negative for everything), then we may be looking at an autoimmune issue.

On top of that, he’s developed a rash which has since gone but it’s the same type often seen in kids with leukemia.

And as if that wasn’t enough, meningitis has also been on the table all week. A spinal tap sounds simple (ish) but for a child with Tuff’s vascular condition, it’s not. It can change the pressure in his brain and potentially create serious complications, so it’s been treated as a last resort option. However, he’s presenting very well and not like a baby with meningitis.

Meanwhile, his head circumference has been increasing…about half a centimeter almost every day since Monday.

So… fast forward again.

Because of the rapid head growth, he had an MRI last night. We spent the entire day on edge, preparing ourselves for the possibility of surgery. But once again…no hydrocephalus. Instead, we learned that this kind of rapid growth can actually happen after multiple embolizations due to pressure changes. Neurology, neurosurgery, and interventional radiology all agreed that he’s stable enough to go home and be monitored weekly by our pediatrician.

Thank the good Lord for that.

But as it goes with Tuff, it’s not that simple.

We’re still here because of his ANC. Until we understand why it’s so low, we can’t leave. Right now, his immune system is gone.

It’s taken me forever to write this. Managing my anxiety while entertaining a mobile baby is no joke. Praying. Praying. Praying. I also apologize if you reached out and I haven’t answered you yet. My brain is trying to organize everything and if I’m being honest, my capacity for other people’s emotions is capped.

Meanwhile, Tuff is… incredible. He’s thriving in his own way, soaking up attention, learning to crawl, sitting up on his own, and even cutting his first tooth.

Chris and the kids are in survival mode too. We’ve had so many people rally around us, and we feel that deeply, but we’re all still just trying to keep our heads above water.

We’re not out of the woods yet. We still need answers. But we are taking the wins where we can. Please continue to pray for us. Pray for Tuff to be healed.

I’m wiped.

As always,

Tough like Tuff 💙💪🏻

Well… we’re still here, and we still don’t have answers.

Tuff is his happiest self when his fever breaks and he’s not being poked. He flirts with everyone that comes in, smiling, showing off, just being his sweet, happy self… as long as they aren’t the ones with 💉 🤪

His fontanel is smaller, but it’s still bulging. The fever keeps coming back with a vengeance as soon as the meds start to wear off. In between those episodes though, he is completely himself, happy, playful, and 100% normal.

Right now, he’s got everyone stumped. The main concern they’re ruling out is meningitis, but based on how he’s presenting, they don’t think that’s likely. No one wants to jump to a spinal tap unless it’s absolutely necessary, especially since his labs yesterday looked really good. He just had repeat labs drawn, so we’re waiting to hear what the next steps will be.

Please keep praying for us. This boy has already been through so much, and it doesn’t get any easier watching him go through more.

A small update.

We had a long night. Both Chris and I feel like we are on another planet but ultimately thankful we are here.

We’ve been admitted to the hospital for observation. The viral panels all came back negative. Still not sure what’s causing the fever which is also presumed to be the issue with his fontanelle to swell. When his fever comes back, the swelling seems to increase so he’s getting Tylenol around the clock. When the fever is gone, he’s happy, healthy and active.

Stool sample is next and hopefully we will get some more plans from neuro.

Please keep saying prayers for us.

Tough like Tuff 💙💪🏻