Team Dallas - Our Canavan Disease Warrior, North Branch, MN (2025)

10/31/2025

We are hanging in there 😊🙃

10/29/2025

Deputy Dallas thinks the sound of mom's crutches are funny 😆

I rested my leg on his recliner and was banging the crutches on the floor and he just laughed his little heart out 😂😂 So cute. He loves him some funny sounds!!

LAUGHTER IS THE BEST MEDICINE 💖

10/18/2025

Sorry for making everyone wait so long for an update. Dallas was discharged from the hospital a week ago and it has just not been easy. So much has changed. He is still having a hard time from a respiratory standpoint. Dallas has chronic respiratory failure and Adenovirus really did a number on him. It always takes SOOO long for him to get over any sickness. Since getting home we have managed get a few smiles. But we are still having a hard time keeping his oxygen up without LOTS of extra suctioning, respiratory treatments, bipap, and Oxygen. All the same stuff we were doing in the hospital, we do here at home. He is also coughing a lot (which is actually a good thing) But it sounds terrible. I do think the botox in his saliva glands helped, but it is not what I expected.

Then mid week he started crying in pain and running fevers. So Ryan and I took him to Urgent Care because things just aren't getting better. His lungs looked good but he does have a UTI and we are still waiting for culture results to find out what kind of bacteria is growing. He is on Antibiotics and hopefully we don't have to switch. Sometimes he gets resistant bugs that need different treatment.

So hopefully resolving the UTI will help things get better. He does seem to be less uncomfortable today but still just tons of coughing. We also n checked to see if he had any new viruses and he was all clear there. So getting over the virus he had is just going to take time.

Oh and switching from G-tube to a GJ feeding tube is the only reason we are even able to be home right now. Anything goes in his stomach he still throws it up. So thank God for an alternate way to give him hydration, nutrition, and medication. But it means he is constantly hooked up to a feeding pump which is no fun.

I did have to postpone my Knee surgery because Dallas has been so sick. It is now scheduled for October 28th.

Lots of changes, TONS of extra work, sleepless days and nights, but I am blessed and thankful we made it home and are still able to be here despite him still being sick. Because there is no place like home 💙

10/09/2025

Dallas did really well for his botox procedure today. He did need to be intubated so he is on bipap. But aside from some occasional discomfort, he is doing pretty good. He is still giving us laughs and smiles. And lots of drool! It could take up to 6 days for us to notice any improvement but we are hopeful 🤞🙏 And it should last anywhere from 3-9 months. Everybody is different. It just depends on how he metabolizes the medicine.

Here are some pictures from our day so far!

10/09/2025

Hi friends! Dallas is still in the PICU because of his Bipap and Oxygen needs, but he is feeling better!

The improvements: He has been giving us TONS of smiles and laughs the last couple of days. The ileus has resolved and his GI tract is back in action. He is tolerating the J feeds into well with no vomiting. We have been slowly increasing his "free time" from the bipap machine. He tolerated being off Bipap and Oxygen most of the day today!

The Challenges: His heartrate has been elevated and he still has fevers. His lung sounds are still coarse and his work of breathing is not ideal. And his secretions/saliva are beyond excessive. He is trying to drown himself. I could literally sit there with a suction tube in his mouth 24/7. He isn't teething. This is an issue that has become increasingly worse over the last few months and this Virus made it exponentially worse. We did a trial run with Atropine drops and Sclopolamine patch but he had bad side effects so we had to stop. He also had a few bursts of pain today that made him cry and his heart rate went through the roof. We aren't sure what is up with that and unfortunately he can't tell us. But it seems to come in bursts and then resolves on its own. Gas pain possibly?

The Plan: Dallas will go down to Intervention Radiology OR tomorrow morning for botox injections into his saliva glands. This will temporarily block the nerve signals that stimulate saliva production. And we hope it helps! We also hope he won't need to be intubated for the procedure. But he will be under general anesthesia so it is always a possibility. But keeping his lungs safe is a huge priority right now, so we need to do what we need to do either way. If anyone reading this has experience with botox for secretions, share how it has worked for you or your loved one in the comments!

In other news, my pre-op is scheduled for this friday and my knee surgery is scheduled for Tuesday.... and I suspect I will need to push those back 1 week at least. There is just not going to be enough time. Emma's heart monitor came off today so we will mail that in then wait for results. Emma is also sick. She has been coughing and sniffling for weeks but we assumed allergies because its allergy season. She always gets j***y this time of year. But her symptoms and cough got much worse over the weekend so Ryan took her to urgent care and she also has pneumonia!! But hers isn't from Adenovirus like Dallas. She actually has a bacterial infection called C. Pneumoniae, which is worse! And it has a 3-4 week incubation period, and can leave you sick for months! So we really have to be careful and pray Dallas doesn't get it too. He tested negative for it a week ago. Let's pray it stays that way and that Emma starts feeling better soon! She has been on Antibiotics and steroids since Monday and she said she is starting to feel better and cough less.

Dallas has been enjoying watching Live on Patrol in the Hospital. Unfortunately, we can't patrol the PICU halls and hand out citations because he has a virus. So we have been giving them out to the nurses and doctors that come to us. Oh and Dallas got his SPA DAY today which is a hospital tradition. As always, he loved it! 💆‍♂️☺️💆‍♂️☺️💆‍♂️

Thank you all for the prayers! And please report any scammers or fake Dallas pages you see! I do my best to block them from this page, but it can be hard to keep up with when I am busy caring for him. Love you guys 🥰

10/08/2025

HEY Team Dallas... I can't believe I am even typing this. But I need you to go report this fake page. I already did but the more the merrier!

Prayingfor Depuyt Dellas 😡

10/04/2025

Music therapy and respiratory therapy all in one 🥰 We love Music Therapist Tony!

10/04/2025

Dallas is sleeping comfortably in our new room. His Oxygen and work of breathing are doing much better on Bipap. I also added a picture of his new GJ button for those of you that haven't seen one before :-)

In other news... our new PICU room doesn't have its own shower 😭😭😭

10/04/2025

Update 10/3 - Transferred to Pediatric ICU. Dallas had several episodes of acute on chronic hypoxemic respiratory distress with O2 in the low 80s. He has been working really hard to breathe all day and the secretions have been insane. So we moved to PICU to put him on BiPAP and give him more intensive support. Despite his latest X-ray showing that the Pneumonia has resolved, the Adenovirus is doing a number on our little man.

We also switched from his G-tube to a GJ-tube this morning. He tolerated the procedure really well and didn't even need sedation. But now he has an ileus which means his GI tract is not moving...and it is FULL of air. So we are back to holding all feeds and venting his G-tube while we wait for his bowels to wake up and start moving.

Today has been a 1 step forward and 2 steps back kind of day. Praying that tomorrow goes better for my little man 💔🙏

10/03/2025

10/2 Update: Dallas is still on IV fluids and slow continuous pedialite into his stomach (30ml/hr). We are slowly going up on the pedialite every 6 hours and will eventually try to add in some formula tomorrow or the next day depending on how he tolerates. He tested positive for Adenovirus 😔 Normally a common cold/virus in most kids, but minor viruses make Dallas get very sick. The bottom lobes of both of his lungs are collapsed so breathing and secretions are still a challenge. But his lungs overall did look better so we will likely be stopping the antibiotics on schedule tomorrow. For now, we added a scopolamine? patch to help with the secretions. And when he is feeling better, we are going to send him down for a quick sedated procedure to switch him from a G to a GJ feeding tube. That way, I have an alternative way to keep him fed and hydrated if/when he is vomiting so bad. Especially during bug and virus season. It is like adding an extra tool to my tool box. If he isn't keeping anything down, we can just bypass the stomach and give him what he needs directly into his intestines. It will just take a lot longer.

All in all, today was a better day. He didn't vomit, we were able to keep him hydrated, and we have an answer as to why he has been so sick.

Adenovirus can cause pneumonia, bronchitis, nausea, diarrhea, all the things we are dealing with. But in Dallas it rises to a level that requires hospitalization. This is also why it is so important to wash your hands frequently, cover your coughs, and stay away from Dallas or any other medically fragile child ... even if you just have a sniffle.

But we also know the reality of viruses and even if you do all the things....sometimes you just can't avoid it 🤷‍♀️ It is what it is so we just have to do the extra work and help him get over this hump. It is not the first, nor the last time he will be hospitalized because of some pesky virus.

I will say that he was VERY happy he got to watch Live on Patrol! The excitement wore him right out. He fell asleep at 5:30pm and he is still sleeping. I expect him to sleep through the night too.

And as always, thank you Team Dallas and the Backseaters for all of your love and prayers 💙

10/02/2025

11:00pm and we are finally settled into our room. Dallas is sleeping semi comfortably. But his Oxygen is sitting at 92% so he will likely be going on the oxygen mask since we are holding the bipap until we have this vomiting I under control.

As always, thank you for the prayers and love everyone! Hopefully we can get this resolved quickly. I am just happy he is on IV fluids. I have been worried all week about him getting dehydrated.

No answers yet. His bowels are dialated but not twisted so that is good news. Not sure what next steps are. We may have to switch from a G to a GJ feeding tube. All I DO know is that I am exhausted and going to try and get some rest.

10/01/2025

Deputy Dallas is in the hospital. Despite antibiotics for pneumonia, we are still dealing with major projectile vomiting and my gut said something else has to be going on. So we took him to our home away from home. Childrens MPLS.

So far we know his brain MRI is stable and his shunt is intact. Next we are going to do an abdominal CT with contrast to make sure he does not have vulvulous or intestinal twisting causing the vomiting. Labs have been drawn and we are waiting on those results. We also sent a UA and stool sample for testing. And he is getting IV fluids.

We are being admitted and hopefully it is a short stay with fast answers and a quick fix!

Team Dallas - Our Canavan Disease Warrior

10/31/2025

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