May 9th

Sorry for the delay in an update. The last few days have been what I like to call “green days”, no major setbacks, no major victories, just steady days in the middle. Honestly, we’ll take that.

Both boys have been a little extra crabby lately, but we continue to move forward one day at a time. They are getting older and more aware of their surroundings.

Declan has had a tougher stretch this week. Because of everything his body went through last week, the team is running cultures to check for possible infections. Progress remains slow, and there are still a lot of unknowns ahead. His kidney function, however, has improved significantly, which is a huge positive. He’s continuing to have better urine output and fluid balance and is now off Dialysis. His incision partially opened and requires complex wound care management, but at this time it appears stable…. Keeping an eye on him.

Colton continues to battle severe breathing issue and chronic respiratory failure. While his progress is also slow, there have been some encouraging signs recently. Since switching to a new breathing tube to minimize leaks, his oxygen saturations have improved and he’s been able to stay under 50% oxygen more consistently, which is a safer range for his lungs. He still requires high ventilator pressures at times and the road ahead remains uncertain. The team anticipates he will need prolonged respiratory support and feeding support, and there is still the possibility of needing a tracheostomy in the future if long-term ventilation becomes necessary.

Overall, there’s no dramatic update right now, just two little boys continuing to fight through incredibly hard things. Some days progress looks big, and some days progress simply looks stable. Right now, stable is enough for us.

Next week we will be having a family meeting to discuss long term and short term goals so we can get these boys home.

Thank you to everyone continuing to pray, check in, and support our family through all of this.

Naked Colton

Declan