All the days are running together. I have to really think which day of the week it is. As I typed the title I put Thursday instead of Wednesday. I feel like my brain is turning into mush. Last night as I was lying down to go to sleep a code blue was called in the cardiac ICU. I have met a sweet mother who's daughter is in the CICU and my heart sank thinking it could be her daughter. And really just thinking it was any child made my heart hurt. A code blue is something you never wish to have happen to your child or anyone's child. I experienced two of them when Emylie was 4 and 6 weeks old and I think I still have post traumatic stress from them. Each time the nurse and respiratory therapist do her trach cares or change her trach ties I get a pit in my stomach. When they move her in her bed I have fear of something happening to her trach. The fear is always present. There was one nurse who even told me, "just let us do our job!" I am sure I can be annoying but oh well, I have to make sure they are taking care of my girl.
Today, WEDNESDAY....was a good day for Emylie. She looked more like herself today than any day here so far. She was playful and silly. She laughed with her hand over her mouth. She cried but not much. She wasn't as moody. She was more interactive with the nurses. She smiled. She made me laugh and smile.
There is a new attending doctor on shift this week...Michelle Schober. The nurse practitioner this morning was Tisha. I talked to Tisha before rounds. I told her that as excited as we are to get Emylie home I want to make sure she is ready so we don't have to come back. She felt like another day of watching her would be beneficial too. When the "rounded" and the doctor saw how much morphine and adavan Emylie is still on she thought she needed to stay until Friday to get the amounts weened down. Also because of her work of breathing and desats into the 60's and 70's when crying they concluded to not send her home today. So they weened the morphine from 3 to 2 (not sure the measurement right now) and then tomorrow the adavan will be weened. They usually only do one at a time. I had asked the nurse if we could try turning the oxygen down to 1.5 Liters instead of 2 because Emylie's oxygen saturations were 97-98%. The respiratory therapist came in and made the change, her sats dropped to 94%. She has done well throughout the day on the 1.5 liters. We did some crafts this morning and she played with stickers and played bingo. She took another 4 hour nap...which is great because she woke at 5:30am when they did her trach cares and did not go back to sleep. That is too early for a little girl and her mommy. ;) During her nap she desatted a couple times to the 80's and 70's but with suction she came right back up. She sounds really coarse but does not have a lot of secretions. After waking from her nap the nurse, Laura and I gave Emylie a bath and changed her linens. I got to sit behind her in her bed and do her hair. I also got to hold her earlier as well. I would like to think that she feels better after having her bath because I feel better for her. I think it was about 6pm, my brother Garry stopped by. He was around for a conference and came by for a visit. It was fun to visit with him. Emylie was playful and laughed at him as he talked for the horse. At shift change Garry and I went to the cafeteria for dinner. I don't get to see him very often and enjoyed visiting with him! Thanks Garry! When I got back up to Emylie's room the nurse was just finishing changing Emylie's diaper, which had leaked all over one of the pillows that was used for propping Emylie's legs. Ok, sorry I probably could have left that out.....As she was moving Emylie she realized that it had gone all the way through the linens. So I got to pick Emy up and cuddle while the nurse changed the linens. We got her all comfy in her bed. I am a little worried about her scoliosis progressing. She is so weak and will lean/fall towards her right side most of the time. Dave noticed tonight that she kept tilting her head to the left. I am going to have to watch what she does tomorrow with that. We then colored, played with magnetic dolls, filed her nails a little, skyped with her Daddy and sisters, played her tablet, watched Mickey Mouse and now she is trying to fall asleep.
If I knew how to get pictures off my phone, I would show you the big cheesy grin she did earlier today - - it was more her!! As scary as it is to think she may take weeks to months to recover completely it was really good to see her smile and personality today. I felt like we are going to be okay.
Okay, she is asking to brush her teeth now. She is so more awake than me. Oh, and I forgot to mention, she suctioned her own nose and mouth a little this evening. It was very impressive!
Good night!
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