November 18: lungs improving. i'm a ball of negativity today..its late as usual.

I'm just plain exhausted here at 2am, so this may be more brief or obnoxious. 

She was switched to a conventional ventilator late last night. She seems so much more comfortable on this ventilator. 

I haven't seen more of the choreiform movements, but then again they increased her sedation last night.

They are going to do trials off the ventilator tonight. I don't know why they have to do all the respiratory stuff in the middle of the night. Maybe they work on other things during the day. I'm worried about her being able to cough. She was already so weak and refused to cough when we were home for 10 days, but when her airway was finally cut off, she'd be forced to cough, and then she'd vomit. Not sure how this is going to go. 

Ava made 15mL of urine today. This needs to be consistent to celebrate, but we can do a little mini-cheer for the kidneys. 

The nephrologist waved his "magic wand" of paper work for the genetic testing of atypical HUS in front of Ava today. He filled out the paperwork and then pulled it from the chart because he was still not convinced. He said that maybe if he threatens her with it her lab values will normalize. It was all in good humor. The test is 5,600 dollars and is done in Iowa. I was curious. The test also only predicts 30-50% of cases. The rest are still unknown. He is going to draw another LDH lab value tonight and if it comes down again, I imagine he'll hold off on it altogether. The nephrologist talked to me for a long time about different dialysis options and what is best for little ones. He said infants do better with peritoneal dialysis about every other day when it is discovered that this may be more long term. 

GI came this morning. I missed him. Nothing profound coming from that way yet. We want to make sure her stomach and bowels are very healed after that bleed. For reference: that bleed drained about 400mL of blood from her body out of her stomach and intestines/ostomy site and out her nose. Her little body holds 500mLs they said. 

She is off all vasopressors (squeezing the blood vessles) including vasopressin and octreotide and she is off the nitric oxide inhaled (vasodialator to help lungs to take up more oxygen). These were necessary steps before even thinking of feeding the gut. 

She is still extremely yellow from bilirubin. That has not started to come down yet, but it is not increasing every day either. 

Personal struggle: Trying to be a mom to all my kids, but ultimately having to pick between them. Again, Ivy is not allowed in the PICU and I wouldn't think of bringing the boys in there, I'm pretty sure they're not allowed either. My situation is going to get very complicated after this weekend. The only time I will be able to be with Ava is if someone is watching Ivy..at the hospital. She does not take a bottle and I am not pressing the issue because it is really the only time she sees me right now. I am not sending her back to Idaho and losing another kid. My boys have taken an emotional hit, but praise God, they know how to verbalize it, at least some of it.  Hanging out at the hospital for long days is not good for them, so can you see how complicated this is with Ivy who needs to stay by me. I also can't have a different person watching them every day. That is NOT healthy. ADditiionally people are not allowed to watch them at the ronald mcdonald house unless I sign over and notarize temporary custody (which I have done for Vicky) and they cannot go to yucky playlands or preschool because they need to stay as healthy as possible. So I either pick my boys and Ivy, or mess up everybodies' lives and attempt to spent what could potentially be Ava's last days with me. There is no magic answer to this. The hospital needs a freakin' program to address this issue with people like me. I have been battling the same issue since April. So out of state moms only get to see their critically ill baby on the weekends unless they have family that doesn't work and can spend indefinite amounts of time out of state..also not practical. Mom's that have twins are even more screwed. This is the same rant I've had before. It's just on my mind and giving me a horrible headache. If it were a couple weeks, I could stomach it, but we've already played this game for 7 months. Again, no magic answer because my boys already need therapy. But, thanks for listening to my diary entry. 

p.s. I love everyone, but I also sleep in when I can. It is impossible to get back to sleep if my phone makes noise because my body is now trained to do that. I cannot silence it because the hospital needs to get ahold of me so it is turned up very loud to wake me if it does ring. Please don't call or text before 10:00am. Ivy has been sleeping late too because her schedule is royally goofed up. Facebook doesn't matter because I don't have noise attached to those alerts.  sorry, love you all. I do love the support, desperate for it actually. 

p.s.s. If I am ever too tired to type on this blog I am going to skip days or have really pathetic medical jargon updates for myself. I know that is rough for everyone else, but I am barely surviving here.  Do not be offended if I do not answer all messages, texts, or facebook. i'm low on emotional energy. again, sorry. here's to being human today. Cheers.