So Much For Going Home...

My goodness.  This is getting ridiculous!  Yes, we were told it looked like we'd go home Thursday or Monday.  We were a little apprehensive about Thursday because it would mean going in for lab work and a clinic visit on Friday and not having anywhere to go over the weekend if issues came up.  We felt like there were some unresolved issues with his sodium, and it would be nice to get everything tuned up where it should be before going home.  That being said, I still planned to room in tonight, and I brought the car seat in for the mandatory "car seat trial" where Joshua spends a few hours in it hooked up to the monitors to make sure he is safe, essentially the last requirement before graduation from the NICU.

Not so fast, Karrn...we're not done messing with you yet.  For starters, his sodium is 134, too low to go home without supplementation and close follow up.  Oh, and he didn't eat much overnight, and he lost weight last night (down 25 grams, almost an ounce), so maybe this ad-lib demand trial isn't going so well. 

Then there is yet another issue that showed itself today.  He hasn't pooped since yesterday, and he received a suppository then, and he has to prove he can poop on his own before he can go home (and the past few BM's have been pretty loose).  Ok, no biggie.  Just to be on the safe side, they ordered an x-ray to make sure there wasn't a bowel obstruction, something that often lingers after a history of NEC (yep, it's still haunting us).  It turns out he has a bunch of stool and barium from his swallow study on Friday sitting in his rectum, and it's stopping everything up. Since I've been here today, he hasn't wanted to eat much, just a few sips here and there, understandable since there isn't a lot of room in there.  If there is no stool in 24 hours, he'll need a barium enema for closer evaluation.  Hopefully it's all related to the barium not wanting to pass, but the enema would rule out a much more serious and potential diagnosis, Hirschprungs, a disease that usually ends up with surgical removal of part of the colon.  I never thought I'd get to a point in my life where I would be pleading for this, but PLEASE PRAY FOR POOP!

Since we know we're staying til at least Monday, I asked if we could stop the diuretic on a trial basis. They always said we'd either go home on it, or we have to be off it for 5-7 days before going home. It's the reason we're having sodium issues, so I'd love to get rid of it now, while we're here.  If he starts to work harder to breathe or is unable to eat as much (due to difficulty breathing with the suck-swallow-breathe thing) or requires increased oxygen, he'll have to go back on the diuretic.  There's another prayer request, that he'll breathe well without it. 

I might as well throw out a 3rd prayer request for our mental well being because James and I are feeling like we can't take much more of this.  Of course we'll deal with whatever we have to, but it's getting harder and harder to stay positive because it is just dragging on and on and on and on......

I'd love to turn this into a devotional and include an uplifting song or scripture reference, but I'm feeling pretty tapped out right now.  If anyone has a good one to share, please do. 

Thank you!