Shep's world

Shep's world This is Shep's life with Tracheal Agenesis, a rare congenital anomaly in which there is no trachea at birth.

Shep's dealing with H Flu for the 2nd time this month but still managing to maintain his smiles.
05/22/2026

Shep's dealing with H Flu for the 2nd time this month but still managing to maintain his smiles.

It's Global Trachestomy Tube Awareness Week 😍
05/18/2026

It's Global Trachestomy Tube Awareness Week 😍

Shep's 1st time outside since his helicopter ride 34 days ago. He's still working on a couple of things to get to his ne...
05/15/2026

Shep's 1st time outside since his helicopter ride 34 days ago. He's still working on a couple of things to get to his new baseline but overall he's doing pretty good and still a happy dude. Trach training is also moving along well for mom and dad.

Happy mothers day to all the mamas out there 🩵
05/10/2026

Happy mothers day to all the mamas out there 🩵

A little update on our brave boy 🤍He’s doing incredibly well after his tracheostomy surgery and is finally back to being...
05/09/2026

A little update on our brave boy 🤍

He’s doing incredibly well after his tracheostomy surgery and is finally back to being full of smiles again. He’s officially off all sedation and pain medications, transitioned to toddler feeds, and continuing to show us just how strong he is every single day.

Right now, we’re working toward finding our new normal and creating a safe baseline for home life. Before discharge, mom and dad have several weeks of training ahead of us so we can confidently care for him at home with all of his new needs.

This next chapter may look different than we imagined, but we’re so grateful for the progress he’s making and for every step forward. One day at a time 💙

05/04/2026

Been awake since 5am and finally took his 1st nap at 3:30. Even though it was only 25min he woke up all happy and smiley.

Today was a big day for our boy... He received a tracheostomy and handled it like the little warrior he is. The procedur...
04/29/2026

Today was a big day for our boy... He received a tracheostomy and handled it like the little warrior he is. The procedure went smoothly, his paralytic was removed, and he came back from the OR ready to rock and roll.

Before long, he was back to smiling, playing, and relaxing with his favorite movies — just being himself again.

In the days ahead, we’ll see how he tolerates his vent weans and begin slowly weaning medications. It’s another learning curve for mom and dad, but after everything we’ve already walked through, we know this will soon become part of our new normal. One step and one day at a time.

The reason for all of this... With the removal of 1/3rd of a titanium ring that was causing erosion into his "swallowing tube", the malacia (floppy-ness) was enough to send him into severe respiratory distress so the only option was to insert a tracheostomy tube. This will bypass the malacia, and whether it's temporary or permanent, this is what Shep needed to survive.

Update on Shep. The past 2 weeks have been a rollercoaster of events but last week the team fixed the kink in his Jejuna...
04/27/2026

Update on Shep. The past 2 weeks have been a rollercoaster of events but last week the team fixed the kink in his Jejunal Conduit (hiatal hernia). The surgery prior to that where they trimmed a couple of the titanium splints has caused an increased amount of malacia (collapsing) in his upper airway. After having increased work of breathing post op, it caused his vesicostomy to prolapse (I know, we can't seem to get rid of a problem without creating another). He seems much more comfortable on the ram cannula over bipap and nose mask, which has helped but the airway still collapses at the cricoid level. For now, things are being slowly weaned to see how he does but a tracheostomy would be the next option if he continues to struggle. Then the vesicostomy needs to be addressed after his work of breathing is stable. He still has a long road ahead of him and we appreciate you all for your prayers and support 🙏

2 days after his 7hr surgery Shep is starting to smile again. The team extubated him yesterday and he seems to be doing ...
04/18/2026

2 days after his 7hr surgery Shep is starting to smile again. The team extubated him yesterday and he seems to be doing well. Next week he'll go back to the OR to repair a kink in his Jejunal Conduit which will hopefully allow for better drainage through his esophagus. In the meantime we're all just hanging out waiting for the next stage so we can bring him back home. ♥️ 🙏

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501 6th Ave S
Saint Petersburg, FL
33701

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