Oct 1st- post round update

So far, it has been a good day. I love lists, so maybe that is the best way to explain why:

1) Emmy went all night without a seizure!!! This means that either she is getting better, or we have finally found meds that work. While I am hoping for the former, I am happy for the latter. We are hope, hope, hoping that she can go another 24 hours without a seizure. The EEG shows a bit more activity, but she still has not coughed or twitched. Her pupils are still responsive: 2-1. No certainties because she is so sedated and has been through such trauma, but no reason to give up hope that our little girl is still there.
2) Emmy's BP has remained stable despite being taken off all pressers. Yea Emmy!!! A normal BP for a sleeping toddler is around 75 and Emmy has been fluctuating between around 72-110. That is good. She has, so far, responded well to her decrease in fluids, and we will continue to wean her today. Her heart rate is good. She even had a Vagal response when she pooped during rounds. This is where the heart does a little jump to show Emmy pushed her poop. For real? I never thought I could be more excited about poop. Of course we all cheered, "Yea Emmy!"
3). Emmy's liver has shown improvement. Two days ago, her lactic acid was 18 and it should be 1, but we were told they would be happy to get it down to 13. Well, our little over-achiever brought it down to a 9 yesterday and this morning's labs were at 5.6!! Her ammonia levels are also down today. It is usually 60-80. Emmy was at 180 yesterday and today she is at 140; while this is still high, it is good that she is going down and 300 is really the numb to get scared at, so let's just continue on this downward trend.
4) Emmy's o.I. ( that stands for oxygen index people, get with it) is a 9. This is not bad. We want to keep it under 10. Over 10 means the lungs are struggling. Emmy's right top part of her lung is collapsed, but no one thinks it is a big deal. Apparently, it is common because of all of the fluid in her esophagus that she can't cough out on her own- which we really hope and want her to start doing soon- but she is getting percussion therapy to break stuff up and getting plenty of oxygen.
5) Emmy peed a bunch during rounds causing us to cheer again! Her urine output is still low but for the day, so far, is showing potential to be better. We need her to pee all this stuff out. It will help her body to get rid off all the excess causing the edema ( fancy word for swelling folks) and to get some of these meds out of her system so we can see where she is at neurologically. If her urine output does not improve enough with the diuretics we are giving her today, or if it decreases, we will look at CVVH. Okay, I don't remember what that stands for, but it is a more gentle kind of dialysis. The purpose would be to just help the kidneys do what they are not able to do. We are also talking to infectious disease about the antibiotic they still have her on. It is day 7 of the antibiotic and it could be inhibiting her urine output a bit as well as causing seizures- one possible side effect.
6) they are working on letting me hold her soon! We almost got to do it today because she is stable enough now and on fewer drugs and machines, but the stupid EEG wires are still in the way, so maybe tomorrow; if she doesn't seize for another 24 hours, neuro might let us take her off of it, and then I can hold her, and I just know she is waiting for the mama to hold her to wake up ;).

We appreciate all of the thoughts and prayers and emails. If you are still looking for something specific to think, meditate or pray about, we really want her to stop seizing forever and ever and to show signs of neurological function- a twitch or cough or kick or squeeze. It would make my day.

Today has given me butterflies in my stomach. I have not been so excited and hopeful since we got here. It is scary,actually, because we really are not through the woods at all and there is so much to go and so much unknown, and we haven't gotten through a day here yet without some horrible new development, but for the first time, I am hopeful that maybe today, we won't get any bad news.

Thank you a for continuing to love and support our little Emmy.