Hello again!  We had some guests today to offer up extra hands and more loving arms.  Papaw and Nana drove up for the day. They cuddled the boys, and we enjoyed a late lunch to get some fresh air.  J also drove over for the day to check in on us, and bring me a few supplies since we are here longer than I had anticipated.

 

THE BOYS!

Nolan: He is off of oxygen.  I hear that his lungs sound better, then someone else talks about a new crackle, so that is essentially a changing status.  He continues to get breathing treatments every 4 hours.  In general I think he’s doing better, moving phlegm, and getting his appetite back.  He is spitting up less.  His volume is not up to 100%, but he’s doing better nonetheless.   He still has an NG tube in, but we haven’t had to use it today.  I still think he might get to go home tomorrow, as long as his lungs aren’t getting worse.

Landon: He was off of oxygen, and now he’s back on.  His heart rate is more regular, and his temperature is holding a little better, but late this afternoon he kept letting his oxygen level drop.  Nothing drastic, but enough he earned a nasal cannula again.  Like Nolan, the sound of Landon’s lungs changes frequently, and he gets breathing treatments every 4 hours.   Early this morning, Landon spit up a mucus-y brown substance. We had planned to feed by mouth, but that made them tap the breaks.  He did it a few more times today.  One of the times, I was able to catch some so we could run a sample.  They do not suspect it contains blood, but want to check anyway.  I think it is a combination of mucus and stomach bile.  Anyway – Landon hasn’t taken anything by mouth today except his meds.  Rather than NG, he is still getting fluids via IV.  Landon is clearly feeling better…his eyes are open more, his color is back, he is awake more.  But we have to make a lot of progress on feeds before he will get to go home.  So, it’s up to Landon now.  And today, he was content with a slow pace.

 

It will be interesting what becomes “good enough” to get sent home.  We have handled a lot at home.  Much of the boys life we’ve been acting as nurses just as much as their parents.  So if we’re down to breathing treatments, and watching fluids to ensure hydration until they get back to full health, we can take over.  And quite honestly, heart rate dips, oxygen level dips, and temperature regulation issues are daily issues for the boys more so than a regular patient.  So their baseline for “healthy” is far different than the norm.  I think the key is getting Landon drinking more volume, and at least part of it being milk as opposed to just pedialyte.  So…we’re praying tomorrow is the day Landon gets an appetite, and that his belly can handle the introduction of feeds again.