October 2nd post round update

Rounds went well. Another good night- no seizures or anything!- and another good morning. Time for another list:

1)Emmy's heart rate and blood pressure continue to improve. She is holding her own without any pressers. Her platelets were low enough this morning that she needed a transfusion and has some small purple dots on her chest, but she used to get 1 unit every two hours and now she only gets 1 unit a day. So that is progress.
2)Okay, so I know what you have all been waiting with bated breath to find out how much Emmy has peed! Well, the answer is not much. Not enough, really, but the news isn't necessarily bad. During rounds they did some sort of calculation that show her kidneys are functioning fine, but that the fluids are not getting to where they need to go and that is why we are not seeing the urine output we want. To rectify this, they are giving her a lasik (sp?) sandwich. They are giving her a round of lasiks, a round of of Albumin - which she is responding to really well- and then another round of lasiks to promote diuretics. She also urinates every time Dr. Moel- the nephrologist- comes in. I think he scares the pee out of her. So overall, not good news, but not bad news either. She is peeing 6 cc an hour, better than the 3 cc she was doing yesterday.
3) Emmy's liver function is still unstable but no one is freaking out. Her Bilirubin count is low- that's good- and her ammonia went down again to 127- again,good- and her lactic acid is down to 3.9. Additionally, the liver doctor stopped in saying that children's livers tend to recover well because they are still growing so that,too, is good; however, we just have to wait and see.
4) Emmy still has not seized. I think it has been over 36 hours now. This means the meds are working, and I hope it also means she is getting better. We are keeping her on the anti-seizure drugs. She will be on those for a long time. They make her sleepy. Still, we are seeing periods of good activity on the e.e.g. I notice that when we laugh, there is more activity. Emerson always laughs when we laugh, even when she has no idea what is going on. Sometimes she even does a fake laugh and lifts her shoulders and throws her head back just because she wants to be included in the fun. I like to think that is what is going on when I see that activity on the e.e.g. when we laugh.
5) We are weaning her off of one of her pain killers/ sedatives, Fentinol. She started at 2.0 and then went to 1.8 and we are going down to 1.6 today. They decided on this when looking at her pupils, which show she is pretty drugged up! We also just want her to wake up more and most of all, to react!!! Supposedly, the first sign is usually that she jerks her hand away from us. I cannot tell you how badly I want this to happen today. I am going to pinch her all day! They also said that because she is waking up, we will need to put up guard rails when she is left alone- like she is ever left alone, that never happens with the family fighting over who gets to sit with her. I am excited to hear that for some reason. I love the idea of having to fight her to stay in bed someday.
6) Emerson is way less edemic today. Her eyes are not as puffy and we can open them way more easily. Her hands, face and legs are not as puffy. She is still a little sumo "Roessler"- get it?- but she is no longer in the heavy weight class. This is good and mostly a reaction to us not having to fill her with so many fluids.
7) Okay folks, I saved the best for last! Are you stll reading??!!! They are turning down Emmy's ventilator more and more every day. Today, they turned it down enough that those green hills and crests indicating her breaths had a bit of purple on the way up some of the hills. While purple is a pretty color, that is not what made me want to jump and down. The purple is Emersom!!! She showed that she is working on her own to initiate some- not all, but some- of her breaths. This was thrilling. She is doing some breathing on her own, and they turned down the number of breaths on the ventilator to make her take some of her own. I am so proud of our girl.

I know things can't stay good forever; I am bracing myself for an inevitable set back at some point, but I am so,so,so grateful that we have had a whole 28 hours without anything bad happening. I didn't even have to cry once yesterday. It was nice.

I have to say thank you again for your thoughts and prayers and words of encouragement. My mother in law, Ineke, went to church this morning and someone got up to ask that the congregation pray for Emmy. She was so shocked because she didn't even know this person or know it was going to happen, and she was so incredibly touched she had to step out. We have all been so overwhelmed by your support.