Friday, December 19
Long time no update, again! I'm sorry!! Faith is doing well, so don't worry... we are finally able to hold her whenever we want, and take her in and out of bed by ourselves, so I have been busy making up for lost time.
She has no more chest tubes and is in a "big girl bed"! She is on very little oxygen through a nasal cannula, and is off of both Fentanyl and Octreotide. The chylothorax is all better (but she can still just have skim milk for awhile). The only lines she has going into her anymore are her Broviac, which she'll keep probably pretty much the whole time we're here, since she's so hard for IV's, and her NG tube (the one that goes down her nose to feed her).
She did NOT have MRSA, we just found that out yesterday; it was actually some other kind of Staph, but she is done with antibiotics now and out of isolation once again.
She has started and stopped feeds more times than I can count since the weekend. Unfortunately, when they first started feeds, her stomach wasn't moving the milk through, so when they would aspirate her NG tube the milk was coming back up. Then she started having green stuff again. Then she started throwing up green stuff, and that's where we've been the past 3 or 4 days. They talked about doing an upper GI contrast study with a small bowel follow-through for a few days, then finally yesterday Dr. Sandoval was in the room and she threw up, and I think that got them to decide it was time. They took her down for that about 1/2 hour ago or so; it is supposed to take 2 hours.
The thought is that she must have something in her intestines that is keeping what's in her stomach from getting through. She hasn't had a real sized poop since the weekend, just a couple of smears the other day, and nothing since then, even with suppositories. I don't think they're thinking blockage, but possibly a twist or a narrowing (stricture). Anything like that they do find, they will have to go back in and fix with surgery.
The one good thing is, she is doing so much better, so she will likely do much better with surgery this time around. And the chylothorax thing should NOT happen again, so we don't have to worry about that. And, we should have answers as to what's going on by the end of the day today.
Please pray for us for patience, because as much as I knew things like this could happen with gastroschisis, I had told myself they wouldn't happen to us... and pray for Faith that it's nothing serious and they can fix it easily. And try not to worry, all of this is still well within the range of "normal" for gastroschisis... actually the stories of kids who start feeds and do really well right away and go home are abnormal (darn Emma for getting my hopes up!).
So, that is that... stay tuned later today for a lovely picture montage to make up for my days of not posting! (PS- anyone who wants to come see her and hold her- as long as you're not sick- she is open for holding now!)
5 weeks ago