Ava had a good night but she did have her normal morning snit fit. They put her on the home vent later in the afternoon and she was upset and need her albuterol treatment so they took her off. She would even throw her toys around when Lung Center came by her. They came back a bit later and put her back on the home vent (LTV), and she was good for a while. Then her vent would alarm because of high pressure so they decided to take her off over night and try again tomorrow.
While I was there tonight she got very upset after I picked her up, she decided to turn red then purple on me and there was no calming her until we put the O2 bag on her. I picked her up again and she did the same thing. I tried to calm her by singing to her and rocking her but nothing would help except the bag on her trach. I thought maybe her mama being able to be there would help, but it didn't. I don't like her turning purple. I was hoping that she would be better by now than to have this happen. She did used to turn grey though and even a bagging her wouldn't help right away, so I guess it is an improvement. We touched her tummy afterwards and she would scream in pain. So we think it may be the new formula. Her tummy around her GJ tube looks irritated and sensitive as well. Our poor baby. But hopefully the vent will work tomorrow and we can get home.
Ava weighs more today - 6.92 = 15.26 pounds! Yeah! She is 15 pounds!
Thanking God for Ava's lungs and praying that the home vent will work until she doesn't need it...
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