Day 41

Before I get to Holden's update, I have a continuing prayer request... One of Holden's heart friends here in the CICU needs prayers. His name is Taylor, and he's 9 months old. He's lived at this hospital his whole life, and been through two open heart surgeries, among numerous other things. His parents were told this week that he won't be able to get the third surgery in his series, and he isn't a candidate for a transplant. They're hoping to extubate him today so they can take him home to join the angels in peace... If he can't be extubated successfully, they're going to let him go home to God. Please keep this sweet baby boy and his parents in your prayers today... Pray for their strength and peace during this horrible time.

Our problems feel small compared to what this other family is going through, but we have them nonetheless. Holden's had a pretty rough morning, comfort-wise. He seems to be in a lot of pain... Usually we can comfort him, but he's been inconsolable all morning. He's had all of his regular meds, and we're going to see if an extra dose of morphine helps him out... It's unimaginably hard to see your baby in pain and not be able to do anything about it. I want to pick him up, kiss him and make it better, promise him that everything is going to be okay. I can't do that, and it's hard.

His lipase numbers are still the same, not up or down from yesterday. His chest x-ray looks a little worse this morning, more hazy and wet. He sounds a little more crackly, and he's having some issues keeping his oxygen levels up... Nothing major yet, but still things that worry us.

One of the anesthesiologists came by last night and told us that Holden's on the surgery schedule for this morning. He's the second case, so he should go in around 10am. We didn't get the pair that we were hoping for, so he'll be re-intubated today. Again, the surgery itself isn't a big deal, and usually re-intubating wouldn't be a big deal either. With Holden, things are different... We worked for weeks to get that tube out of his mouth, and I'm terrified of putting it back in. There is a risk that it will set back any progress he's already made... I hope and pray that doesn't happen. I'm ready for these doctors to fix him and send him home with me... I just want my little boy back.

(Updated to add: They've decided to hold off on his surgery for at least another day, since he's having so many problems this morning. We don't want to take any unnecessary risks by sending him to the OR with other issues.)