PICU Day 11

A crummy day...I am emotionally spent. Things continue to look bleaker and no one here knows if we will ever get Noah well enough to make it out of PICU. It all feels quite surreal, and I hope to wake up and discover it was all just a bad nightmare.

Our peripheral IV is still there for now, and our crappy central line is still functional enough to get some TPN in. Noah was also switched back to the CPAP settings today. We are starting very tiny amounts of tube feeds, as Noah's gut may soon be all we have left for nutrition. Those are all the good things.

But Noah is in a bad place right now and we are backed up against a wall, with no good way out of here. He continues to ooze blood, (although it is slowing once again) and needed another transfusion this morning. With line access being such a huge issue, we had a team meeting this morning. Unfortunately, with the holidays, many of the people who know Noah are away, but we had to put some sort of plan in place. It was time to discuss end of life plans, and what heroic measures we want done to save Noah's life. We were asked if perhaps this is the time to stop things, make Noah comfortable and let him go. The major reason being that Noah has no good line access left. We knew eventually this would become a life/death issue for him. I just never thought it would be now. But we did a floroscopy study this afternoon, and discovered his major vessels on the right side are all either clotted or very scarred, as well as his femoral veins. The line he has right now is right up against major scar tissue, which is why it is flowing backwards. Unfortunately, the left side is still an unknown. It may be a possibility according to ultrasound yesterday, but his circulation paths are now so changed that there is no way to know without taking him to the OR.

After many discussions throughout the day, thankfully, the surgeon has left the decisions up to us, willing to do whatever we decide. We have agreed to send him to the OR tomorrow afternoon to attempt one last line insertion. I am not done fighting for him yet, and we think this is his best chance at getting over this major hurdle so he can be assessed by Toronto. We have said no to the more heroic measures of a thoracotomy for line access (an incision directly into the chest cavity) as this is a highly painful procedure, with major post op lung complications, and if survived, can lead to a lifetime of pain issues. But even this regular line insertion is filled with risks as well and there is no way to know if it will be successful. There are just no good answers here, and getting a line in will not get us out of the woods, it may only lead us further in, but I am praying that it will buy us more time to figure out a better plan. Praying for another miracle...

I am unable to look farther than one day at a time right now...to think further than that is completely overwhelming. One day at a time...

Thank you friends for the goodies you brought by today. You made a miserable birthday a little bit brighter.