Back @ NCH

Annnnnnnnd we're back! We had a trip to the ER Saturday morning because Callista was throwing up what looked like old blood. I also got a call during this visit from urology saying she had another UTI and we got antibiotics for that. After a six hour visit, they sent us home saying it was not blood and they could not find anything wrong. At 1:00am Sunday we made another ER trip because every 10-20 minutes, she continued to throw up. After another six hour stay, they informed us it was blood (same stuff as before magically turns into blood? Or perhaps someone screwed up the first test!). We were admitted to the hospital Sunday around 7:00am. After numerous tests, they cannot find anything that would be causing the blood, and they basically blame everything on her UTI. I get that UTIs can cause vomiting, but this isn't her first one and it has never been a symptom of hers. I can't help feeling like we are missing something but since she is no longer puking the black stuff, they've dismissed it. They started her on small bits of pedialyte and she has not been able to handle more than 5ml per hour. They told us yesterday they would not rush into anything like a GJ tube, but this morning were seriously pressuring me. I talked them into starting formula instead of pedialyte because her formula is thicker and I'm hoping it's what she needs to keep everything down.

A GJ tube will go into her jejunum which is the top of her intestines. This would bypass her stomach but still allow her to get all the nutrition. The major down side to this is that she would be on her feeding pump 24 hours a day, 7 days a week. I can't make it clear enough how NOT interesting I am in that. So they've given her all day today to tolerate food and after that I'll be forced to choose a GJ tube. They act like it's no big deal, but it certainly is to me! We struggle with mobility already, so what's a tube attached to her all day every day going to do for her? Let's hope and pray really hard that when they start the formula she can handle it. I know she needs nutrition and I'll do what is best, but I do think she deserves a chance before we jump into this.

Of course they are also making a big deal about her breath holding spells as well. I realize they are scary, but she has done this since she was born. She gets mad, she holds her breath, she turns blue, she breaths again, and voila it is done. It looks frightening yes, and I was scared out of my mind the first few times it happened, but we've seen it enough now to not panic. But apparently the nurse on night shift did panic and a doctor ended up ordering an apnea monitor (she does not have apnea....). After speaking with the team today, I got them to disregard that monitor. From what I read on the internet, although it's not super common, other kids have these spells, so why does everyone act like this is some strange occurrence? Ugh. Of course this all has to happen the one night I do not spend the night with her.

Other than gagging on everything (and the occasional tantrum), she is in a very good mood and looks healthy. I hope everything gets figured out soon so we can go back home.