Ethan has been at children's for 8 days now. We have certainly had our share of ups and downs. He is truly doing so much better. Cooing, smiling, and playing with everyone that walks in the door. This cold is just down right nasty!!!!!! After 5 days of IV steroids and every 4 hour breathing treatments, I finally think he out of the clear going to the ICU. He is still getting breathing treatments around the clock every 4 hours and suctioning.
Now another issue exits, his oxygen levels are dropping to the 50's when he goes to sleep. A new physician is on this week. She was ok with his oxygen levels in the 60's "because most heart babies are lower 75-85% when they're awake, so 60's is acceptable." I waited a few seconds... NOPE I'm not ok with that!!!! Ethan's oxygen levels baseline are 85-95%. Why would it be ok all of a sudden sick or not for him to hang out in the 60's?! I want to know WHY he is dropping that low. After 4 weeks in and out of the hospital. I know my son's numbers. Sleep apnea? Doesn't appear that way to me. They are consulting an ENT to evaluate. Down syndrome babies have low muscle tone, they wonder if he is obstructing his airway. I personally think it's this virus running it's course. They are also repeating an echo of his heart to see if he has worsening heart failure. He has been showing signs of heart failure since he was 3 weeks old. They change his meds a bit, it gets better, change them again, gets a little better.
All and all Ethan needs to have the AV canal repaired like now!! But they have to wait until he is better, now it's another 4-6wks, so January! Nothing like fighting off all bugs in the middle of winter?!?!
So the plan now is to get this figured out and have him out of here by Friday!!! So blessed to have such great care by the nurses here. I've gotten to know all of them and they are now our family!