Update on Declan Jet

Let’s try this update again. It will be LONG. A lot has happened. We are still bedside with our little man.

First and foremost, thank you. Thank you for the prayers, the messages, the support, we have felt every bit of it carrying us through these last few days. Even if we can’t answer or reply back. We see you.

Declan went into surgery on Wednesday, January 29th. The surgery itself went incredibly smooth, truly better than we could have hoped for. We were so relieved when it was over, believing we had cleared one of the biggest hurdles.

Declan no longer has an ostomy. Instead, he now has a G-tube in place, which could potentially be removed in as little as six months. That felt like a huge step forward……

But right after surgery, things quickly became scary.

We had a moment where we thought he might need to go right back into the operating room. His blood levels, vitamin K, blood pressure, and oxygen all dropped out of normal range. In an instant, the room filled, alarms sounded, and it became all hands on deck. It’s hard to put into words what it feels like to watch your child surrounded by a full medical team moving that fast….but we knew he was in the best possible hands.

They stabilized him, and he was watched by the entire team, 10 to 15 specialists…closely monitoring every number, every response, every second. For hours, doctors and nurses stayed right outside his room, ready to step in at any moment….. Still, it was all so scary.

The next day brought a whole new challenge.

Declan went into acute kidney failure.

Things moved fast…really fast. He had to be rushed to have an arterial line placed so they could begin dialysis. Hearing the words “kidney failure” attached to your child is something no parent is ever prepared for. The doctors believe this is acute and reversible, caused by a lack of blood flow, but he needed immediate support to help his body recover and to remove excess fluid.

From there, it became a whirlwind of critical care. (I’ll never ever be able to articulate what all actually happened… but whirlwind seems to be the best word. Or Tornado. Or high speed rollercoaster where you can’t see what’s around you…. Scary)

Declan developed anuria (no urine output), hyperkalemia (high potassium), and hypotension despite increasing medical support. Once they were able to stabilize his potassium levels, further imaging revealed something more: an obstruction in his aortic arch caused by the PDA occluder device. (The surgery we did 6 weeks ago on his little heart and hole) There was a significant pressure gradient, meaning his blood flow was being restricted…. (Side note: Colton has the same. Another story. another issue… for another day)

Because of that, he had to undergo a cardiac catheterization procedure to place a stent and relieve the obstruction…. 5pm at night. The entire team stayed… best surgeons in the world, stayed for our Boy. Dad came as FAST as he could, mom never left the rooms and held Colton’s hand…. Terrified.

After that procedure, he was brought back to the NICU, where dialysis was restarted.

And finally…. some hope, blood pressures from his arms matched his blood pressure from his legs…

The next morning (5/1) we began to see spontaneous urine output again. A small but powerful sign that his kidneys may be starting to recover. Declan remains on mechanical ventilation, but his breathing numbers are reassuring. His blood pressure is being supported with medications, and today we are seeing more stable readings along with improved urine output.

He is not receiving feeds yet and is on full parenteral nutrition. There hasn’t been stool output, and there is still some gastric output, but his sedation is appropriate, and he is tolerating dialysis.

Alll day yesterday, our boy was resting.

He is healing.

And he is fighting through more than most of us will ever face in a lifetime.

This has been a roller coaster we never could have prepared for, but we are holding onto every small win, every sign of progress, and every bit of hope.

In the middle of all of this, we’ve been present for rounds, sitting with the team, asking questions, and trying to take in information that feels impossible to fully process. The doctors & staff have been incredible, taking the time to walk us through everything, the challenges, the plan, and the hope.

(His nurses… their nurses. Forever our hero’s. Forever in our heart… another blog in the future…)

We don’t have all the answers yet. There are still a lot of unknowns. But today, he is here. He is stable. And that is everything.

Thank you for continuing to pray for Declan. We truly believe those prayers are carrying him through.

We’ll keep updating as we can…. 💔❤️‍🩹

P.s. — Colton is fussy, but seems to be a distraction for mom. He is doing well and we can feel the twin power. They know. They are communicating….