May 17th - Colton’s turn

Today was a mixed day for our boys.

Colton had a really rough day. The last few days he’s been struggling more with his breathing, but today felt harder. He was taking quick little breaths instead of long deep ones, almost hyperventilating himself by taking three or four tiny breaths in a row. Last night he became more unstable and needed increased ventilator support, higher oxygen, and more sedation medications to help his body rest.

He remains on the ventilator with oxygen needs between 45-60%. His blood gases showed elevated CO2 levels, so they adjusted his vent settings again. Because of everything going on, they did a full sepsis work-up and started antibiotics as a precaution while they wait for results.

They increased his pain and sedation meds to help keep him comfortable. Thankfully he is still tolerating his feeds well, having good stool output, and his blood pressure and urine output are staying okay. He also received an iv lasix today to help with some of the extra fluid. Seeing him puffy again is hard. He can’t open his eyes.

Declan, on the other hand, had a pretty stable day. Things have stayed steady the last few days and we are so thankful for that. His little face looks extra skinny right now, especially next to his puffy brother. Today he got his oxygen down to 25%, room air is 21%, and that feels like such a huge step. We are getting closer and closer to hopefully getting him off the oscillator tomorrow and slowly starting to wake him up again.

I miss his eyes so much. I miss holding his hand. I miss his hugs. I cannot wait for him to wake up so I can see my boy again.

We also had a visitor today, and honestly it was something my mama heart really needed. A friend came by to sit with us for a little while, and sometimes just having someone there beside you makes the hospital feel a little less heavy. A little comfort of peace.

Thank you all for continuing to pray for our boys, especially tonight for Colton’s breathing. One step at a time.

Update as of 10 PM Sunday night. Both boys are paralyzed as they both need to lose the extra fluid on their bodies. Wild. Let’s hope this next week is a better week.