Discharge

Isn't it funny how easy it is to get in to the hospital and how impossible it is to leave?!

It's 3:30. We've been ready to go for three hours. Yup, three. Sigh.

Last night I got much more sleep than I expected though we did have a rough patch for awhile. 

Around 2:00am he started to desat to 88-89 and then would jump back up to  the 90s. I tried turning him to his side and coughing with the cough assist every ten minutes or so. The nurse came in and mentioned oxygen. I got nervous and text Jon as well as asked some moms on FB. I've heard oxygen isn't good for SMA but I wasn't sure under what conditions.  Jon woke to get his text and said we should cut back on the oxy, because it will depress ventilation. The next half hour he dropped to the low 80s and wasn't coming back up. I was coughing him constantly. The nurse finally showed up with some o2. This helped to get him over the hump, the oxy wore off and he was fine again. 

They came for more labs. First phlebotomist tried twice and couldn't get it. IV team came and got it on the second try. Poor guy. 

Then there was RT. We asked them to come help us get the endless junk out. Coughing wasn't enough. They used a manual percussion disc he disliked and then ended up needing to suction. Suction is the end of the world to Benson . After being suctioned, he told us at least once an hour not to suction. And anytime someone came in the room he told them not to suction. At this point, the dr came in and said we could go. Hooray. This was at 12. We figured an hour and we would be out. It's 4:30 and we are just entering Bountiful. Four lovely hours to get out. Lots of mix ups and miscommunications. But we are finally out and things look better already.

We did have a few highlights to the day. A therapy dog came to visit. We went and saw the play room. And Vanessa made Benson very happy being there.