Okay so we had kind of a rough couple of hours last night between ten and midnight and needed to up Luke's oxygen support to between .30 and .50 liters. Fortunately things got better after that and we were able to get him back down to .20 and right now he's at .10. We've tried taking him off the oxygen and letting him breathe room air this morning and he wasn't quite ready for that, so he's sitting steady at .10 liters right now. He will need to be on room air for some time (seems that different doctors here have different requirements for how long) before he will be discharged. I've heard that depending on the baby, they can transition to room air quickly without needing any extra support or that he could wax and wane with his needs and it could be a couple of days or longer before he's okay without his nose cannula... Guess we will just have to let Luke dictate what his needs are. That said, I don't know when we will be getting out of here.
He's been feeding well over the course of the last day and a half and we are going to be removing his feeding tube this morning, yay! Doing the deep suctioning (nt) treatments that have been going down into his throat have really seemed to help him get rid of the secretions, thus helping him to breathe better through his nose while nursing. I'm thankful that we seem to have gotten past the sluggish feeding... I was pretty nervous about the potential for him to become dehydrated and need an IV.
I've been reading a lot about RSV and have learned that it often turns into an ear infection once the bronchial distress has passed. Considering that Luke is more susceptible to ear infections because of the low tone associated with Down Syndrome, I've asked for him to have an ear exam today to determine if fluid is starting to build in his ears so we can potentially get ahead of the infection and know to expect it so we can get him on antibiotics if an infection shows up and becomes necessary.
We might be having the echocardiogram today if they can get it fit into the schedule with cardiology. I know that the doctor was going to make sure it gets ordered, but I haven't heard anything more since rounds were completed earlier today.
Lastly, I've been feeling bad for Luke not only because he's sick, but also because he's spent the last five days laying on his back in his crib without much mental or physical stimulation. Now that he seems to be breathing better and hopefully will have more awake and alert time today, I think he might be ready for some fun and have asked that they bring in a mobile or something interesting to look at when he's awake and alert. I'm also going to try some of his therapy exercises and tummy time today too.
I've had a lot of Facebook and text messages over the last few days. Thank you to everyone for keeping us in your thoughts and prayers, we really appreciate it! The love and support we've felt has been really amazing and has really helped me get through that last few days as I've sat here worried about our little guy. Hope you're all having a great week!
Luke and your sweet family have been in my prayers every day. Keep up the positive attitude, there's no doubt in my mind, he can sense your great strength, energy and love! :)
ReplyDeleteThanks Meggie!
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