May 19th

First and foremost, both boys are starting to wake up a little. Today was what I like to call a “green” day. There were still some scary moments and a few issues throughout the day, but overall things seemed to even out by tonight and after the week we’ve had, we will absolutely take that.

Colton

Colton is still receiving high ventilation. His oxygen needs stayed around 40% today, and overall his blood pressure and urine output looked okay after stopping diuretics yesterday because of some borderline blood pressures.

Today they lifted his muscle relaxant medications, and they have slowly started decreasing his sedation... we’re watching the swelling and trying to balance everything out. He had his eye exam and everything is still the same and stable. No negative changes. He also got a new central line that will help us provide him medicine for his upcoming surgery.

We are ready to proceed with his trach. We will share more once everything is officially confirmed, but at this point we truly believe this will give him the best opportunity for a long life and eventually allow him to just be a kid. It will absolutely change what the next few years look like for our family, but we are focused on giving him the best future possible.

Declan

Declan remains on the oscillatory ventilation with oxygen needs around 23%. (Room air is 21%) He is still receiving heavy sedation and muscle relaxant medications, although they did decrease some today.

His belly still needs significant time to heal, so nutrition continues through IV. Labs showed some mild kidney issues, so we are watching closely.

But tonight, right before the end of the day, we got something we desperately needed.

He started wiggling his fingers.

And then I got the tiniest little hand hug.

I checked in with his nurse again tonight, and he’s still moving just a little bit. I’m hoping tomorrow maybe I’ll get another little hand squeeze. We are being extremely cautious, though, because while we are beginning to wake him up some, we still want him heavily sedated so he doesn’t feel everything his body is going through right now. He needs rest, and his belly needs time to keep healing.

Overall, this last week has honestly been pure hell.

So many decisions. So many ups and downs, mostly downs. A lot of fear. A lot of waiting. A lot of moments where it felt impossible to breathe through any of it.

But then these tiny little moments happen, a finger wiggle, a tiny hand squeeze, a slightly better number, a calmer evening…. and suddenly those little victories feel absolutely huge

We still have a very long journey ahead of us. But our biggest hope is still the same: futures for both of our boys.

The start of their story may be incredibly hard, and these next few years may look different than we ever imagined, but I keep reminding myself, and honestly reminding anyone who will listen….. that we are getting them ready for kindergarten.

So that’s our goal.

Our goal is kindergarten.

Healthy, active, little boy, by Kindergarten.

Please continue to bear with us over these next few months and years as we learn a whole lot of new, hard things. We are taking it one day, one hour, and sometimes one tiny hand squeeze at a time.

💙🩵

Colton Ryan

Declan Jet