Probably the most you ever cared to learn about drainage

More of the same has been happening around here. Just basically waiting for Evan’s drainage to slow down to a level that they think is acceptable.  Evan always has a bit of a pleural effusion because he suffers from congestive heart failure and we manage it at home with diuretics.  Finding the balance of what is normal vs what is still stemming from surgery is tricky.  He was getting Lasix, Aldactone, and Diurel.  Evan got down to below his dry weight (what he weighed when he was admitted) and they thought they dried him out too much and so they removed the Diurel.  This also caused his chest tube drainage to increase, as he is draining fluid instead of peeing it off.  Now his weight is back up so they re-added the Diurel and hope to see his drainage go back down.

His drainage levels are:

9/11 = 460 mL
9/12 = 460 mL
9/13 = 110 mL
9/14 = 78 mL
9/15 = 68 mL
9/16 = 84 mL
9/17 = 85 mL (so far)

Sometimes they don’t look at the output levels in terms of a day (midnight to midnight) and instead calculate based from 7am one day to 7am the following day.  When you look at those numbers, his drainage is more impressive.  It was the jump back up to 110 that made them add more diuretics:

9/11-12 = 740 mL
9/12-13 = 192 mL
9/13-14 = 108 mL
9/14-15 = 80 mL
9/15-16 = 70 mL
9/16-17 = 110 mL
9/17-18 = 45 mL (so far)

We are encouraged to get Evan out of bed and walking around to help squeeze out any pockets of fluid that have built up.  He has 2 chest tubes, one for each lung, and I was thinking that one wasn’t draining nearly as much as the other.  Today they removed his big box that both tubes drained into and split them into two.  We’ll now be able to tell if one lung is dry and potentially get that chest tube removed.  The fluid is looking clear and not milky, so we are feeling more and more confident it isn’t chyle.  The best way to tell is with a high-fat diet, so Evan has been enjoying his fair share of bacon lately.  Or has he says, “Mo macon pees.”

Chest tubes are uncomfortable but honestly he manages it like a champ.  He doesn’t really complain about them hurting and when we are out playing he is all business.  It’s like he doesn’t even notice them in.  He is developing more anxiety, or maybe it is more pronounced when I am here.  I don’t know why his behavior is so different with me than his dad – I don’t think I really treat him different but he cries and whines a lot more when I am around.  Now even when they come to flush his IVs he wants me to hold his hand.  He doesn’t freak out like some kids, but it’s definitely getting worse the longer we stay here.

Here are some photos from Sep 14 – 17.  Thank you again for your continued support!  We honestly couldn’t do it without all of you.

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