The problem has been found....hopefully!

McKinley, Brooks and Me not long before our stay at Children's

So...we're still here. 17 days in the hospital and counting. 14 of those days came and went with McKinley only getting worse, not better, and us not getting any answers as to why.  Then came day 15, Friday night around 8pm we were told that McKinley would be going into emergency surgery.  During a routine procedure to place an ND tube they hit resistance, and couldn't figure out why.  After doing an ultrasound it appeared that she had duodenal intussusception, a very rare problem that had actually never been seen by the Dr's at this Children's Hospital. Thankfully, once they went in with a scope they realized that in fact that is not what it was, her problem was that her pyloric valve was incredibly inflamed.  So inflamed that it was completely blocking her stomach. The reason it was inflamed was because the balloon at the end of her G-tube was inflated inside of the pyloric valve, when it really is only supposed to be inflated inside of her stomach.  We're unsure of how long it has been that way but our suspicion is that it has been that way since January 5th, when she had the G-tube placed.
So, during the procedure they decided to place a G-J tube which is a feeding tube that bypasses the stomach. Today they started feeding her through that tube and so far she is tolerating her feeds.  They are increasing the feeds every 6 hours and so far so good.  They are still draining her stomach so she is not throwing up as much. At this point we are just waiting for the swelling to go down, I don't think there is much that can be done to expedite that process.  Her breathing is the main concern at the moment.  She's having to be suctioned every few hours because she can't breathe well if she's not suctioned.  It's probably a combination of her RSV and being intubated for her procedure on Friday. We're not sure when to expect that will get better either.
So...now we wait.  The question is, will we wait in the hospital or at home? It looks like they are leaning towards sending us home. We would love to be back together again as a family, but not before the time is right. We also want to be sure that her RSV is gone so that Brooks doesn't get it! We are praying for the Dr's good judgement and McKinley's speedy recovery so that we can get back to "normal" life...whatever that may be.... ;)

And...we're still here

Don't ask me how she does it, but she manages to smile even through the puking!

Wow. It's been 11 days since we "stopped by" the ER. And we're still here. McKinley isn't really showing many signs of getting better and the Dr's are still baffled. The CDiff does not seem to be the cause of her sickness as she has continued to throw up constantly regardless of the antibiotics she's been on for the infection. And now the latest news is that she has RSV. She is soooo congested, it sounds like the worst cold I've ever heard! She's having a harder than normal time breathing due to the congestion, but has not needed oxygen so far. The Dr's aren't sure if she contracted the RSV at the hospital or if she had it before she got here. They're currently going with the theory that she had the RSV prior to coming to the hospital and that the virus caused an ileus. An ileus is when the bowel decides to shut down and not function. This would explain why she has very little stool output, no gas output, distention in her belly, leakage around her g-tube and throwing up. Unless they are suctioning her stomach through an NG tube, and draining her g-tube, she throws up large quantities of mucus. It's basically like she's pressurized and she'll explode if we don't get the stuff out another way. So, for the past 11 days we've been suctioning and venting her stomach. The mystery has been that even though we're doing that, she's still been throwing up. With suctioning her stomach you'd think she wouldn't have anything to throw up anymore, but somehow she does!
Having said all that, it has officially been 24 hours since she last threw up! She seems to be in much better spirits today, and I'm praying this means we're on the road to recovery. Tonight they have turned off the stomach suction and clamped her g-tube so I really hope she doesn't start throwing up again!
She's also started to act hungry for the first time which is amazing to me since she hasn't eaten in 11 days, but I'm hoping that's a good sign.
Thank you for all of your prayers.  We feel so loved and would not make it through this without knowing that so many people love our McKinley and are praying for her.  We're praying this hospital stay doesn't extend much past the two week mark!!