6/14/16

Another day with no fever!  No new information today and the steroids have definitely set in as it wasn't the most chipper day. But, tonight marks 20 nights of a hospital bed so who would be chipper at this point?! This morning Cole said, "I think I would act better at home.."  We hear you kid, we hear you.  :-)

Doctors had said that mid-week might be a point to check in on everything to see IF we might be able to go home for current treatment while we wait for all of the pending tests/reports to come back to determine exact diagnoses and new treatment plan. So, tomorrow is "assessment" day for us.

We've been working hard on the things we can control - moving around to work our muscles and lungs, breathing exercises to help our lungs, and nutrition (eating & drinking on our own without IV).  We've gained one pound back, two pounds so far since last week!  We've done really well with a rewards chart for eating and drinking.. So many bites and drinks gets us a sticker, and so many stickers gets us a prize from the prize box we created.  Of course, Cole is competitive as we know, so he earned quite a few stickers and prizes today.

We learned this past week that Cole has a different heart rhythm and while his normal heart rate is also low, the steroids can lower it as well. So we've had a few EKGs and they've been monitoring, all with no concern right now.  

Of course all of the doctors on his case will not let him go home unless they feel it's safe, just like us, but we are praying things are stable and safe enough for him to go home for treatment while we wait. So far things look positive, but tomorrow will tell us more on that front. Fingers crossed we may sleep in our own beds soon!

While we still don't know an exact diagnoses or treatment plan yet.. we are optimistic, staying strong, and keeping faith that whatever road is ahead, we will hit it strong and attack.  

Here's to positive, stable assessments/reports and to taking our incredibly tough kiddo safely home this week.    Prayers up!