Emylie has been home over a week and has done really well. We kept her on 1 liter of oxygen the entire first week. She only needed 1 1/2 liters one night for a few hours. Other than that she did great. On Friday the 2nd I turned her oxygen down to 3/4 liter and then Saturday a 1/2 liter and Monday a 1/4 liter. The last three nights she needed up to a 1 liter but last night was able to stay on 1/4 liter while sleeping too. I tried to turn her oxygen off this morning but within a couple hours turned it back up to 1/16 liter which is very little and not concerning to me. For how sick she has been I think she has done wonderfully. Her lungs are sounding better each day and I would say are pretty close to baseline. This morning her right lower lobe sounds a little diminished over the left. I just finished her trach cares and am a little concerned about something I saw. Not sure if it is scare tissue or granulated tissue but trying not to freak out about it. I know Steve the respiratory therapist at Primary's mentioned something and I saw what he saw then but this is larger and different.
She has been off the Morphine and Adavan for a week. (oh, by the way, I am sorry I misspelled weak in my previous postings....I tried to catch myself each time but apparently missed---) Anyway. :) On Thursday last week she was incredibly silly! Her voice was loud and clear, she would make silly facial expressions and kept us laughing all day. We think she was probably "coming off" the medications. She has been happy....can I just say she is amazing...she can be happy through the stormiest of storms.
The wound on her right hand I think causes her the most discomfort. She doesn't like it to be touched and will cry through any cares we have to do for it and also randomly tells me it hurts her.
Her strength improves each day. She can pull herself up to the side of her bed now and even crawled a couple feet today. She hasn't been off of the vent yet but I feel she will get there soon.
I am very happy to report E2 only got better after the visit to the doctor last week. We kept her and Emylie away from each other for about 2 days and were so so happy nothing seemed to progress.
It seems we are all still trying to get back on schedule. Sleep still seems to be in short supply... one of these days I am sure we will feel "caught up". We are incredibly grateful to be home and have Emylie doing so well and E2 better too. Life is good! :)
I feel blessed to have such wonderful friends and family who give us support. Our good friend Carla came by today to talk Disney with us. Her handsome son went in August on his Wish Trip and she came to share tips. She was so sweet and brought a darling Minnie bag, binder with divers and notebook! I love to be organized and I felt so lucky to have a friend who cared so much! Thank you Carla!!
To all of our friends and family - THANK YOU for your support and love and prayers!
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