Lily had a bit of a rough day yesterday. She got a random bloody nose in the morning, and after being suctioned and cleaned up she was having a harder time breathing. Eventually she was put back on high flow oxygen. She also looked a little puffy to me, and when Zar went to visit her last night she looked puffy enough for him to mention it. Lily ended up getting Lasix to help her pee off extra fluid, which apparently did the trick as her breathing got easier and her lungs sound better this morning. Of course the fact that she is getting puffy isn't a good thing, and I am hoping today the docs will do another x-ray or echo or something to see if she is going into heart failure. With everything going on yesterday I didn't even ask about surgery or the pH probe results. Unfortunately the doctor on now is that same doc who didn't want us transferred from St. Marks just because he didn't want to deal with us. He came in yesterday, looked at me, said hi, and then asked the nurse if I was "the mom". The nurse said yes and the doc walked out. Never saw him again. I don't think we get along well. I'm glad he will be gone again after tomorrow.
So anyway, I'm feeling down today with these new developments. It's also my 30th birthday today. It would be really great if something positive would happen today for Lily. This is just a difficult place to be in. I'm not so sure now whether she should even have surgery for her feeding issues if her heart just isn't healthy enough to sustain her. This not knowing and waiting around is the worst. And who cares about her thyroid function and such if her heart just isn't strong enough? Frustrated and sad.