A Bump

Well, we had a bump today. This week I've been extra concerned about Maddie's low sats. Seeing her low scores at the clinic on Wednesday really confirmed my anxiety on this. Since being home, they've been low as well. So this morning I had her on the pulse oximeter and she couldn't get her sats above 72 and she was hanging in the high 60's. Our instructions have been that if she is running below 75, consistently, to call. So, I did. At this time, Maddie's lips are very purple, she looks more dusky than usual and her behavior had changed. She really wasn't interested in her prior 3 bottles and getting her to eat was a huge chore. Bryan's mom had also stopped by and noticed her "look" wasn't normal for Maddie. The cardiac nurse that I was talking to on the other line even commented that she sounded "weak". This episode of low sats went on for over an hour, so Dr. Seslar thought it was best to either drive right over to Seattle or go to the ER. I chose the later and drove to Wenatchee's ER. Children's was ready for an air transport if needed. Low and behold, our baby girl was still hanging low, although her color had improved by now. We spent 4 hours in the ER this afternoon, monitoring Maddie's sats, heart rate and respiratory rate while Children's in Seattle was getting updates on the other line, deciding what step we should take next. So the decision was finally made...we were discharged, with oxygen (blow-by), and we came home but only TEMPORARILY. We're heading back over first thing tomorrow to check-in at Children's in Seattle. Dr. Seslar believes she's really trending down and these are not just "minor" episodes of desaturations she's been having. They would be considered "minor" if they jumped right back up...not staying low for over an hour (which also happened in the ER today.) The team would like to watch her for a couple of days, monitoring her every "hiccup" and then possibly go into the cath lab next week for her cath procedure. The idea is that she may need her shunt ballooned opened more which would bring her sats up and buy us some more time before her surgery. So, Maddie and I will be leaving early in the morning and she'll be admitted to the floor. We'd rather be safe than sorry with her as would her entire cardiac team. She just needs to be monitored more and figure out what's going on with her and these episodes. I'm completely exhausted and have more to do tonight so I better cut this short. Wish us luck and please keep Miss Maddie in your prayers. We hope this is just a little bump for her. I'll keep everyone posted and hopefully they will be boring ones.