What a day!

I am not sure where I left off so if I repeat myself just don't say anything...and if I sound negative it is the fear and crisis I am feeling.

After the trach changes Emylie was still struggling. Her sats were maintaining in the 80's (remember we like 91 or higher). The doctor talked to me about giving Emylie a muscle relaxer to help her relax. I was nervous about it but felt it was best for her. So they order was made and it did help. I laid next to her in bed. Her nurse, Andrea was awesome and said they would work around me because Emylie needed me there. I tried my hardest not to cry because I wanted to be strong for Emylie, but the tears just kept coming. So then when Emylie would look at me I would try my best to smile through the tears and quivering lip. She was so uncomfortable and shaky. They had given her 2 albuteral treatments back to back which caused her to be jittery. I asked her if she wanted me to sing to her. Remember now, that because of the cuffed trach she cannot make noise, she cannot talk. So as best as she could she nodded her head. I sang the wheels on the bus and with her left hand she did her best to sign the wheels turning and "all through the town", next was the doors opening and closing, the driver saying move on back, the wipers, the baby, the mommy and the horn. Watching her try with what energy she had to do the actions broke my heart and made me happy at the same time. How did I get so lucky to be her mommy? When she got her trach, she could make sounds...nothing...it was heart breaking. Yesterday was even more heart breaking because she would try to talk but nothing would come out. She couldn't tell me what she wanted or needed, or if something hurt. IT WAS AWFUL!
Around 4:30pm it was decided she needed a PIC line and an arterial line. The process was put in place. They gave her more meds to put her to sleep and relax which thankfully helped her oxygen saturation improve. I was able to sit at her bedside and hold her hand. The PIC line was placed. The arterial line took a few attempts. I ended up heading home so I could see Ellie and Elizabeth before they fell asleep and Dave stayed by her side. They got the line in her right foot. From the arterial line they can draw blood, have a constant blood pressure reading and also a constant temperature reading. Her blood counts were low so a blood transfusion was ordered. She has had a fever of 39+C through the night. She is so so sick but I hope and pray with all I have that today will have been the worst and that each day forward she will be on the road to improvement.
She has not been this sick with a virus before and this has been rough. She is strong and is a fighter! And I LOVE HER so very very much!