Today Grace's team decided to do a trial of a trial off ECMO. We didn't know it was just a practice trial till right before, so sorry for everyone who I told that we were trialing! She did such a great job though. Usually they will trial for about 4 hours, but they just did an hour with Grace. Yes, she was off ECMO for an hour today! Between 1:10 and 2:10 pm she was stable on the vent and Nitrous Oxide! She was doing really good, but they didn't want to push her too far. Dr Ruzick (Ana) said she was only thinking they might get half an hour out of her if they were lucky and Grace could have kept going past the hour! She said that CDH babies often crash immediately the first time they trial and she didnt so they are very pleased with how it went and will try again tomorrow! It is such encouraging news because last week it felt like nobody thought she was going to be able to do this anytime soon! The only issues we had with trialing was that Grace seems to have a very high tolerance to drugs. She eats up morphine and ativan like crazy. They upped her limit to 200, when she first got to Mott they had started her on 60, and each day she seems to need more and more. So they gave her 2 doses each of them and she was still breathing very quickly over the vent and wiggling alot, but wasn't uncomfortable but they wanted her to stop breathing over the vent so they gave her a paralytic, which she STILL was able to stay awake through.
They will trial again on Weds. Grace had a hard time coming down from the meds though, she was very twitchy and shaky and just looked unhappy. Weaning her from all the drugs is going to be an ordeal. When they trial her again, they will just let her go as long as she can or for 4 hours and then they will cut the lines and let her be ECMO free! They will leave the cannulas in her neck for probably 48 hours, usually it's 24 but for Grace they are going to leave them in for 48. They leave them in in case they need to go back on ECMO (I sure hope not) so that they don't have to recannulate her which would be hard to do since they tie off her carotid when they decannulate. So please pray that miss Grace can be free of ECMO today and her lungs will continue to do the work they need to! Please also pray that her kidneys have not been affected while she was on ECMO, they are not "worried" they say but it is a concern that they might not function the way they should. She did have some urine output yesterday after not having any for a few days so that is promising.