Heading in the Right Direction

Tyson had a pretty good day yesterday and overnight. He was weaned down to 1.5 litres of O2 during the daytime, but they don't really make plans to continue weaning overnight because of his history with desatting while he sleeps. This morning the nurse continued to wean and he was down to 0.5 litres by 9am.  Which is AMAZING considering where he was just 48 hours ago!! 

He slept well last night. As a teenager he's never ready for bed before me, but with IV meds coming at 11:15pm, there's no sense trying to sleep before then. So we get all ready and tuck ourselves in by 11pm so that once meds are done we can turn off our devices and get some sleep. Both of us always wake up for the 5:30am meds, but thankfully we have been able to fall back asleep quite easily again. The nurse still comes in to check on him and do charting every hour, but we both sleep through that now. 

As of 11am, he is up and out of bed playing Xbox. It's encouraging to see him out of bed. He still gets easily winded from small things like a trip to the bathroom, but he is making good progress. 

Last night he had a bed bath and got himself all cleaned up.  It's amazing how much better you can feel with a clean head of hair and change of clothes. I also washed his favorite Grinch pants in the sink last night and hung them to dry so they were dry and ready for him again by morning. They are his most comfy pants, and it sure beats hospital attire. 

The doctors just finished their morning rounds with him. The plan for today is to take him OFF the oxygen and see how he maintains his O2 sats. They even mentioned the word 'home.'  Once he can make it through the night without needing oxygen, we get to bust outta here! They're also switching him to oral antibiotics instead of IV because the coughing is slowing down and his lungs sound a lot less junky, so that is one step closer to home. 

I have been asking them to lower their expectations for Tyson to maintain O2 sats of 85% overnight. That is higher than what he sats at home when he's well. I have been advocating for Tyson every morning on rounds that 85 is too much to expect of him, and that when we stay on 4D (cardiac ward) they wanted him to maintain 80 overnight. Today on rounds I said it very bluntly and told the doctor "If you're expecting him to stay above 85 overnight, we might as well pack up and move in here."  She chuckled and agreed and told Tyson, "We really like you, but we don't like you that much!"  That got a good laugh out of Tyson.  

So they are going to consult cardiology to make sure that's ok and then will likely lower the parameters to 80 overnight. (Meaning the alarms won't go off unless he dips below 80 saturations.) 

So yeah, once he can go overnight without oxygen, he can go home! The doctor warned Tyson that it's not uncommon to still require oxygen overnight, and if that happens not to be discouraged, but she said we are likely going home sometime this weekend!  

This picture looks almost the same as the one above, but something is missing.

If you didn't see the difference, he is off his O2! He has been at room air for an hour now and is maintaining sats at 89-90%. Praying he can make it through the night without O2, but if not that's ok too. We know home is on the horizon and we are grateful for that.