Daily Update: Week 4 (Updated Sunday 5/26)

 Dear Family and Friends,

Lucas' discharge continues to be a moving target, but we are moving towards it and he is looking really good with his breathing staying minor while we get him weaned off of the respiratory support.

To Get Discharged:

🗹 Move feeding tube to his stomach

🗹 Reduce his High Flow down to 2L/min

❏ Remove High Flow completely - the plan for tomorrow

❏ Monitor for 48 hours - will want to make sure he looks good for more than 24 hours to be sure he can go home

❏ Get a swallow study done so that we know if he is aspirating or not. Aspirating means that when he is eating by mouth that a little liquid he's trying to swallow is getting into his lungs which can be an aspect of low muscle tone which is typical in children with down syndrome. He's been on a feeding tube all this time in the hospital so if we are going to start feeding him by mouth again then we'll want to know if he is aspirating. Fluid in the lungs is no bueno.

If we remove the High Flow tomorrow (Monday) I figured we would leave at the latest by Wednesday if it looked good. But I had a doctor come in just now and say that she's waiting to hear back of when the swallow study will be complete and it may be Wednesday or Thursday. So I'm going to push for Wednesday and we'll see how it goes.

Thank you for all your thoughts and prayers, we are getting there!

Christine, Lucas & Family



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