May 16th - calm update

Overall, today was a Q day. Thank the Lord. That’s all we asked for. (Quiet)

Dad is still recovering at home from this nasty bug, and Grandpa is still recovering in the ICU but doing much better. I had a really good conversation with him today and for the first time in a while, I felt some relief.

Colton, was a little fussy today as we continue weaning everything slowly. The team decided we may hold off on bigger changes for now since surgery is likely coming in about 1.5–2 weeks, once Declan recovers more. Slow progress is still progress.

Colton continues to require high ventilator pressures and FiO2 support to maintain appropriate gas exchange and comfort. His prognosis remains uncertain. The expectation is that he will likely need prolonged respiratory support, which would mean chronic invasive mechanical ventilation and a tracheostomy. We are prepared to move forward, as soon as 2 weeks. He is also expected to require prolonged tube feeds. Right now, he remains clinically stable, and we are just taking this one slow step at a time. Again a bigger blog post and discussion once we can process the family meeting we had on Wednesday.

Declan, we are continuing to keep him paralyzed and as calm as possible to allow his body to rest and heal. He is still on full respiratory support, but we were able to get his oxygen down to 47%, which felt like a win today. He remains on the oscillator for pressure control.

The hope is that Monday can be a turning point for changes and improvements, but for now this weekend is all about rest, healing, and not pushing him too hard. His belly already looks so much better, even just comparing photos, and we are praying more time continues to bring more healing.

Both boys are currently missing their primary nurses, and you can definitely feel that absence. But their current nurses have been doing such a fantastic job stepping in and caring for them in the meantime. We are incredibly thankful for every single person helping carry us through these hard days.

It will be so nice once all of their primaries are back and able to help assist again. Thankfully, I do have some consistent night nurses who have been around for a while now, and they have been such a huge help and comfort through everything.

The charge nurses have also been keeping a very close eye on both boys, and honestly on me too. I truly feel fully supported by this entire team, and that means more than I can explain right now.

One quiet day. One stable day. Maybe I’ll get some sleep…but first a large glass of wine.