I don't know the difference between good news and bad news anymore

Today was a hectic day for us and for Emma. She had a good night last night, with the help of sleep (during which she breathes easier) and some breathing treatments. My sister had an absolutely delightful time with her last night, and being the perfect aunt that she is, she's going to stay with Emma again.

When I came in this morning, Emma still sounded awful, like she was struggling for each breath. Then she got kinda sleepy and calmed down a little. The PICU doctor came by to say that he's concerned about her swallowing and that he ordered a swallowing study. He also asked the pediatric pulmonologist to come back by to do another scope of her throat. I showed THAT doctor a video of her making all kinds of noises, and he was certain that she had some issues with her vocal chords. However, when he had the scope on her, she made those noises again, and her vocal chords are fine. She still has some soft cartilege in a few places that is making some noise.

Then Dr. Troup and his nurse, the PICU doctor, and the pulmonologist plus a bunch of nurses and staff all convened about her. They were very pleased with how well she was doing off the vent...well being that she was breathing on her own still and that her oxygen and blood gases are good. But her respiratory rate is still really low...for some reason, no one seems worried about that. Or maybe there's something they're not telling us...anyway, the doctors still don't really know what's going on with her, which is why the swallowing study and possibly a study to see if she has reflux were requested. If Emma does well for a week, and she can leave on pretty good respiratory terms, she'll have the Chiari decompression done in a month or so. Then she'll have the fluid pulled off her spinal cord in the next few months after that. Dr. Troup just wants to be in the clear with her respiratory issues before he intubates her for another surgery. I asked Dr. Troup: if she does ok for a while in the hospital and she goes home with us, how do we know she's not going to stop breathing again in 3 weeks? And he said, "I can't promise that won't happen."

So then Emma had the swallowing study. This involved her sitting in a chair that moves back in an x-ray machine while the speech pathologist (who actually studies feeding and swallowing) fed her with all kinds of variations of bottles, nipples, and formula thicknesses. Emma aspirated immediately, meaning that she takes formula into her lungs. The best solution they could come up with is sitting her upright, almost at a 90 degree angle, while also pulling her head up from the base of her skull. THEN she has to be fed this incredibly thick formula/rice cereal mixture. And I mean, THICK. When we got back to the room and learned how to do all this, the speech pathologist was giving us the "recipe" for her formula. Her recipe is 1 oz of formula to 2 and a half teaspoons of rice cereal. She somehow came up with 2 oz formula means 8 teaspoons of rice cereal...great math, huh? So we're trusting this woman with teaching us to feed our baby so that she doesn't suck formula into her lungs, and she can't add 2 and a half plus 2 and a half. This sounds like an easy solution to the problem, right? Wrong - she's still not breathing well, and she's choking on her spit all the time now. Any type of problem swallowing is a neurological problem...the neurological problem could also cause her to stop breathing. So if Emma doesn't breathe, it could be because she's aspirated so much formula and spit into her lungs OR it could be that there's a neurological problem that causes her to stop breathing AND not be able to swallow.

We'll be here in the hospital for a while, just watching her lie uncomfortably in a hospital bed while she chokes every now and then and trying to feed her the right way. The reflux study could be helpful because reflux can actually cause the vocal chords to close up. Still not optimistic about that, though...I'm just so discouraged right now. With each day, things are getting ruled out as being problems, which sounds good. Except that with each problem that is ruled out, a solution is ruled out. And today's problem that was discovered is not encouraging - she can't swallow correctly. And may never be able to. And to top it all off, she's getting shots in her stomach to prevent blood clots because her PICC leg is so swollen. And her nose is bleeding because the oxygen running through the nasal cannulas is drying out and irritating her nose. She's been crying the most pitiful little cries for an hour now, and we don't know why. She's still struggling to breathe. She will struggle to eat. And I'm struggling to understand why God brought her here to suffer.