Deputy Dallas - Our Canavan Disease Warrior, North Branch, MN (2026)

05/07/2026

LOOK WHOSE WIDDO FACE IS FREE OF TUBES AND STICKERS!!! 😍😍😍

Yesterday we did two small breaks on low flow and he did so good! Then this morning he did 4 hours all by himself!!! Tonight he made it almost 3 hours! But then he had enough. We are still having to put him on bipap in between, but at least we are finally getting somewhere!!! You can definitely tell it is hard work. He does get pretty tired and when the belly breathing and irritability starts we know he needs a break.

We will likely need to give him more respiratory support even when we get home. More airway clearance with the cough assist and vest. And he will be on the vent for bipap about 16 hours per day (maybe more, hopefully less) as we slowly try to see what his lungs will tolerate.

He was definitely more uncomfortable today than usual, but I still got quite a few awesome smiles!

Tomorrow is the big day for Emma! She will go to the cath lab for another cardiac ablation. This time with heat instead of cold. It will be an early morning but luckily, I am already here 😅 Ryan and Emma will arrive at 6:30am, surgery time is 8am, the procedure itself will take about 3 hours, then Emma will be in recovery where she has to lay completely flat and still for 3 more hours. Grandma Debra C***s is going to stay with Dallas while Ryan and I are going back and forth between PICU and Cardiovascular 🙃

Send prayers for both of my babies tomorrow 💖🙏

05/05/2026

Happy Cinco De Mayo friends!!

This is hospital Day 29!

Things have been moving sooooo slow. But it is 100% necessary.... Dallas has made that very clear!

After 3 failed attempts to get Dallas breathing on his own... and having to start over 3 separate times... it sounds like we are going to try taking a big step forward again in about 30 minutes!!

Do I think he is ready?? I am not quite sure 😔
I really WANT him to be ready!! But because of how the past 3 times went, I am nervous about it. On top of that, he vomited Saturday night and yesterday morning. And he had a slightly higher temp yesterday and today which really makes me worry about another aspiration pneumonia. But aside from temps, he is not currently showing any signs of pneumonia and labs this morning looked great! Doesn't mean we are out of the woods - but the labs were reassuring. So we are going to be keeping a very close eye on him as we continue to challenge him. Unless he says otherwise.

Pray for Dallas for good lung strength! 🤞🙏

05/02/2026

Dallas is loving watching the Live on Patrol broadcast from last night 👮‍♂️💙

We might have challenged him a bit too much yesterday. This morning he started obstructing and desating and his heart rate was back in the 180s. He just wasnt moving air with the lower high flow setting. So we are having to take 2 steps back and "reset" him today.

Pulmonology increased his respiratory treatments back to every 4 hours. We have to increase his high flow settings. And we will put him back on the vent for bipap every 4 hrs to give him a 2 hr "break" to re inflate his lungs.

He is much more happy when he is on the bipap! And when he is watching LOP lol.

05/02/2026

Deputy Dallas' special shout out from our friend Deputy Pat Scott 👮‍♂️💙👮‍♂️

05/02/2026

Deputy Dallas got the sweetest shout out tonight from Ramsey County Sheriffs Deputy Pat Scott 🥰 We also found out that we have a very special gift coming from Australia!! How cool is that?!? 😮😍

I am hoping for a Kangaroo! But hopefully just like... a little teacup Kangaroo. We can name him "Depu-D-Roo" and he can be Deputy Dallas' little mascot 😂😂😂

I am taking this way too far 😅

Tune into Live on Patrol friends! They have been really busy tonight!

I will share Pat's shout-out in the comments 💙👇

04/30/2026

Shout out to my newest followers! Excited to have you onboard! Grace Gilmore, Cassandra White, Shyanne Fleming, Anish Gaddam, כרמלה עמר, Ramona Busenbark, Denise Boyer, Paul Richards, Beth Fry, Martie Matthee, Katya Peeters, Vazgen Pinjoian, Carmela Motta, Bonnie Hudson, Mukesh Kumar, Robin Rients, Ian Gregory, Bonnie Sinclair Merten, Peggy Hays, Evelyn Rondo, Luis Aparicio, صلاح بوهو, Marie-jeanne Rochtus, Ljubica Ljubica, Ryan Hanson, Randall Graham, Chrystal Cramer, Catherine Johnston, Linda Tinsley, Pirone Saveria Maria, Patricia Smith, April Leier, John Marvin Miller, Julie Richardson Sizemore, Melissa Etchison, Tracy Nance, Penny Johns, Annette Brunson, Alonso Vidal, Ben Ginders, Beth Beaudet Krist, Amber Mills, Jude Schuler, Ntwatwa W***y, Tata Samantha, Stacey Carrollclay, Stewart Good, Daniel Bubba

04/30/2026

More music therapy with Tony today 🥰🥰

Unfortunately, there are evil people out there stealing videos from Deputy Dallas - Our Canavan Disease Warrior and sharing them on TikTok. They are criminals! Not for sharing our videos, but for pretending to be ME. Saying they are Dallas' parents and that he has Cancer and they are asking for donations!! That is criminal fraud. 🤬

I am doing everything I can to get them shut down but it will take time.

If anyone has a way of tracking a IP address associated with a PayPal or TikTok account, please let me know! They hide the comments calling them out. And reporting their videos on TikTok has been useless. No violations are found because Dallas does not have a page on TikTok (for reasons like this) I don't trust anything about the platform. There is no customer service or way to defend OR protect yourself. Yes, I filed a formal copyright infringement and impersonation report. And I have done so, SO much more. But I don't want them to know everything.

04/30/2026

We are still in the hospital! The weekend was rough. Fevers, desats (one as low as 60%) seizures, they put him back on bipap for 48 hours. It was no fun. So we didn't get to go home on Monday as we had planned. Any time I have a PLANNED discharge day, Dallas changes those plans. So I am just DONE planning a specific day... we will let him decide from now on. Dallas did much better yesterday and today so I am hoping for SOON!

In the meantime... I am going to photo dump our HAPPY moments from the last few days

I will have more to share tomorrow about our special visitor from last week 🥰

04/25/2026

This guy had a great day today. He was on high flow during the day today with no bipap breaks and did well! He was a little tachy and working hard at times but is improving overall

Now we are back on bipap watching Live on Patrol in our Pajama Patrol jammies after a quick bed bath (too late for a full spa treatment)

We are still working those lungs and tomorrow we hope to give him a trial on room air.

On Monday PHS will be coming to the hospital with a new ventilator that is portable so we can get him home safely on bipap. High flow is not really portable so the ventilator will give him the support he needs and will be a great tool to have since we don't have a portable concentrator. We won't have to worry about him struggling to breathe in his wheelchair in the van and won't need to keep him in his bed at home for bipap. We can just bring it with us! Once I am trained on how to use it and as long as he is still stable we can hopefully go home on Monday! 🥰🤞🤞🤞🥰

04/23/2026

Dallas is hanging in there! We are just working on getting his lungs stronger by slowly taking away Bipap time and increasing high flow time. We are working towards getting him on high flow full time, then taking that away to see how well he does on his own. You want to make forward progress, but it takes a lot of patience. If you move too fast he will get too tired and his lungs will collapse and then you are back at square 1. My biggest concern is making sure he can breathe well enough to make the 1hr drive home in his wheelchair without support. And to all of our future appointments! Pulmonology also mentioned the possibility of sending us home with a portable bipap machine so we have the tools we need if he starts struggling to breathe when we are out and about. We have a home bipap already but it is stationary.

His lungs look much better as far as the pneumonia goes. He finished his last dose of IV antibiotics today! Its just the act of actually breathing that has really taken a hit. Its crazu how hard a "simple" virus can take down a kiddo like Dallas.

Earlier this week Dallas was a more sleepy, pale, and lethargic than usual. He fell asleep at 4:30pm and slept until 7:15am on Weds!! Slept through shaky vest, cough assist, labs EVERYTHING. A quick UA and lab check showed that he was dehydrated. Likely from all the fevers, sweating, and secretions during peak sickness. But that was an easy fix! Quick fluid bolus yesterday and today and he seems to be much more himself. Awake and alert with LOTS of extra smiles 🥰

We also had a VERY Very special visitor that warmed my whole heart. I can't wait to tell you more about that in a different post 💖🥰💖

And also an update on Emma after her Cardiology appointment. Unfortunately, Emma is the unlucky 10% whose SVT returns after ablation. So she has to go back to the Cath lab for another Cardiac Ablation on May 7th but this time they will be more aggressive and use heat instead of cold to eliminate whichever extra electrical pathway(s) have come back or got missed. And hopefully that takes care of it for good!

04/21/2026

Deputy Dallas had a great day yesterday. He was a very happy boy! But he did go to bed way early. Like 6:30pm early which is unlike him.

Today he has been a little bit "off" labs and everything we're good. He just had a little harder time with his high flow trial this morning. And he wasn't quite as happy today. We did get some smiles, just not the belly laughs and laughter we were getting yesterday. Then he fell asleep at 4pm 🫤 They woke him up when they did a blood draw to check his blood gasses but even after that he was just more blah and sleepy and then he started crying a few hours later. He is still working so hard on his breathing to get better.

Not sure what is upsetting him today. He was out of bed, in his chair, daddy and sissy came to visit. His vitals have been ok. Labs good. Xray looks better. He just hasn't been himself. So of course I am watching like a hawk for any clues or suspicions.

Right now I am just keeping him comfy and praying that tomorrow is a better day. He was scheduled to get botox injections in his saliva glands but after some advice, research, and thought, I think I am going to hold off. With his airway obstruction issues I think there are safer ways for us to help dallas manage his secretions.

Also Emma has an appointment here at the hospital tomorrow with her Electrophysiology Cardiologist to after she had another SVT episode on Friday. She had an ablation in January and this is the first episode since. So maybe this was just a one-off occurrence, or maybe there is another electrical pathway that needs to be addressed. I suspect we are going to either wait and see, or go back to the cath lab. Emma has expressed she does not want to have to be on daily medication if she doesn't have to. She is only 12 but I want her to learn that it is okay to advocate for herself. And I want to respect her decisions about her own body. So tomorrow we will discuss what other options we have to keep her safe and healthy!

I will also share some pictures in the comments of Ryan's wound change from today (for those of you that have also wondered how his leg is healing) the yucky pictures will be hidden in the comments under the NASTY gif because it's still nasty lol. So don't look if you don't want to see. They just stopped wound vac and went back to hydrofera blue and absorbent dressing (which I really don't think has helped). But I am no wound doc. Just his dressing change nurse 😉

Deputy Dallas - Our Canavan Disease Warrior

05/07/2026

05/05/2026

05/02/2026

05/02/2026

05/02/2026

04/30/2026

04/30/2026

04/30/2026

04/25/2026

04/23/2026

04/21/2026

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