May 15th

Today was another heavy day.

If I’m being honest, I don’t even understand 90% of what they’re saying about Declan right now. My head is spinning in so many directions. There are so many medical terms, so many conversations happening, so many decisions changing by the hour. But what I did understand is; yesterday…Declan was in lung failure. That’s why he is back on the oscillator. But this boy is fighting strong.

Right now the goal is simply to stabilize him. We are trying to slowly wean him off different things, but for now he will likely stay paralyzed through the weekend so his little body can rest and heal. At this point he is truly hour by hour, day by day. But he is fighting strong.

The Dr. reassured me that she would tell me if things were moving in a more dangerous direction or if I needed to worry more than I already am. Right now she feels like he is stable and moving in the right direction… but in the NICU things can change every few hours, and we know that all too well…..

We are still waiting to hear more from surgery. At one point it sounded emergent, then maybe not, then maybe planned in the next week or so. Everything keeps changing. As of right now it does not sound like emergency surgery is happening immediately, and for that I am grateful.

By the end of the day, Declan is doing okay overall, but he has been having some random episodes that nobody is fully sure about yet. The team is watching very closely to make sure they are not seizures. Another thing added to the long list of worries right now.

And sweet Colton… he is getting frustrated with all the commotion surrounding Declan’s room and all of the attention his brother is needing right now. He is extremely sensitive to noise, so I know part of it is that. But another part is that he’s getting older and more aware. More aware of the tube in his throat. More aware of everything around him.

We will eventually talk more about his future, the family meeting we had on Wednesday. But honestly, we are not emotionally processing any of that right now. We are just trying to get through what Declan is facing first and hopefully regroup next week when things settle down a little.

I keep praying that somehow, some way, both boys are stable next weekend for Dad’s 40th birthday. That’s all I want right now. Stability. A quiet weekend. Some peace. Stability.

As for Grandpa, he is doing well overall. He is still in the ICU, although we were really hoping he would move to a regular room today. Hopefully tomorrow. He has his phone back and is texting again, which feels like such a huge win. Talking is still difficult for him, but he is improving. Been sending him photos of the boys to help cheer him up and give him the strength he needs.

Every day lately feels exactly the same to me. Hospital walls. Monitors. Waiting. Fear. Hope. Repeat.

Overall… I’ll be honest, everything is just really hard right now. There’s no other way to say it.

Prayers are welcome and needed. 🙏