October 3rd-- Sorry to be so late

I am sorry we did not post sooner. Let me say first, it was not because of anything bad happening; it is because the Internet was not working well earlier when we had the time to post, so now we just have to post about the whole day.

Emmy had a good night. Again, no seizures so that makes- well, as of right now- about 66 hours without a seizure. Her blood pressure and temperature have also been fine. We were grateful to get some rest last night.

Today, Emmy has done well and continues to make small strides toward recovery. Her heart rate is trending downward toward the normal range. I don't think she is considered tachacardic anymore. Her blood pressure is also holding strong without the pressers. Platelets were given at 6 this morning, but she has not required more than one unit of blood a day still. They will continue to infuse platelets when when her hemoglobin is under 7.

Emmy has done well with the LASIK- albumin sandwich; she is now producing anywhere from 8-14cc of urine per hour. Because of this, and because her sodium and chloride were low- not dangerously low, but low- they have replaced the albumin with a saline drip. Her sodium is around 130 which is a little low, and low sodium can trigger a seizure, so they are watching those levels.

She will receive up to half of the fluids that she releases. Speaking of fluids, Emmy is not losing as much out of her sponge vac or chest tubes, which is good. Additionally, her edema has continued to go down; she is responding better to the changes in fluids. She weighed 22 pounds coming in; 57 pounds at her peak, and 40 pounds yesterday. Yeah, she's a big girl! I have been assured she will lose all this excess fluid.

They dropped Emerson's respiratory rate again because she is getting stronger and waking up more. Now, I don't mean this girl is even close to awake. When they check her eyes to see if she is responsive, they can tell that she is but barely because her pupils are SO small because she is so drugged still. They have weaned her off the Fentinol from 2.0 to 1.8 and when I left last night it was at 1.6. When I got in this morning, it was at 1.0 and they brought it down to .8 this morning. This is the last of her sedatives other than the Versed which is a sedative and anti- seizure medication, which they are also starting to wean her from.

Okay, back to her respitory stuff. We have a lot more purple today. Her ventilator is at a tidal volume of 65; Emerson is able to reach a tidal volume of about 37 on her own and then requires the help of the machine to get the rest. The doctors are very happy about this. While she will not be off the ventilator in the next couple of days or anything, it was exciting to hear the attending grilling the residents about how to know when she is ready to breath on her own. The doctors said there is only so much lower to go one the ventilator, so they need to know this stiff. Her overall sedation and inflammation determine if she is ready to breath on her own, so we have to continue having success with weaning her from these sedatives.

The nephrologist said that he is happy with Emmy's kidney function and urine output. It seems we are not quite as concerned about this anymore. Her liver doctor- I don't have the big fancy word for his profession- said her ammonia levels and bilirubin are down. Her lactic acid is also down to 2.3. He cannot say this means she is on the mend officially but unofficially indicated that she is on the mend, and he is not worried about liver failure.

Dr. Jones came in- the geneticist- to share good news: she found no genetic or metabolic disorder. I pranced down to the room when I heard she was here with good news and was surprised that this was it. I thought they were going to say they discovered what caused all this and how to fix and prevent it, but that is not the case. We are totally clueless other than knowing about 1,000,000 things Emerson does not have. Still, she said this is good news because she is the last doctor we want to hear from she said. So, that's good.

Last, but certainly not least, is Emerson's neurological function. She is going down by .04 on the Versed- an anti seizure and sedative. While this is good, it is also scary because we don't want to see another seizure, but that is a possibility. They are being very careful as they wean her. She continues to stay on two other seizure medications that are not sedatives, and will likely be on those for a long time- even after she gets home. Emerson tickled the doctor's finger today as he showed a med student how to do a physical exam. So now we have the right toes, the left toes and then right finger. We have not yet seen too much movement or very dramatic movement, but something is better than nothing. She also appeared to be sucking back and forth with her tongue right before rounds.

Overall, Emmy continues to improve, but she is not stable. One med student learned that the hard way during rounds today when he said Emmy is now stable because her heart rate and bp are more regular. The attending said that you can never say that as long as the child is in ICU. This was a scary, but good reminder for us all.

All of her doctors and nurses are excited about her progress and highlight for us all the improvements that she has made... all doctors, that is, except the head of neurology. I try my hardest to get him to tell me SOMETHING good, I even point out her little movements and he says we need a big one and/ or a cough. I will say that her EEG shows more activity and ask him to elaborate in any EEG discussion, and all he says is that it doesn't appear that she is having any seizures. We end each conversation with something along the lines of, "we'll just have to wait and see." I really don't like that old, grumpy guy anymore.

I have to admit that today was a bit frustrating for me. I know this cannot be rushed, and I am glad she has continued to improve, but it seems like we really need to see a big movement or cough soon. The longer it takes to see one, then ore nervous I get. So, to distract me, I continue to read her many books and emails. Thank you for the distractions :).