Yesterday was Grace’s first pulmonologist appointment since being discharged . John took off work early to attend to her on the drive. She is not needing constant suctioning now , but it’s still frequent enough that someone has to be with her in case she needs it while the other person drives . We had to get on the interstate along with five million 18 wheelers and pickups and cars driving 80 mph in a construction zone.
Grace has improved so much. She did really well in the car. John only had to suction a couple of times. She was alert and feisty at the doctor’s office! I saw her pull her hand away twice when the nurse tried to take her oxygen . It was so funny!
A lady was playing a piano in the lobby and Grace definitely reacted to the music. We didn’t have to wait long for the doctor. We liked him . He seemed to be knowledgeable about the ventilator and said he would read her medical records.
He said he would contact the ventilator company about changing the settings so we can give her some trials breathing with just pressure support. I am eager to start . She’ll likely still need the ventilator while sleeping for a while, if not forever . We have to get an appointment with an ENT to manage the trach itself. We are thankful for God’s mercy and grace!
Blue Skies and Green Pastures 
Your Grace reminds me so much of our grandson Rigg! (He has Angelman’s and Kleinfelders syndrome) Thank you for the update Paula. DM
Sorry to hear that your grandson has Angelman’s and Kleinfelter’s. How old is he and how is he doing? I remember when I was trying to get a diagnosis for Grace, Angelman’s was one we considered a possibility.
He just turned 16 I do believe. He’s non verbal, in a wheel chair…
I understand .
So happy to hear that she is doing so much better.
Wonderful news. I’m so happy to hear that.
Team Grace is doing a great job. Let’s continue praying for the help of Team Jesus.
Thinking of you as always!
Thinking of you ,too. Funny aside, I was watching Don’t Mess with the Zohan, and those New York ladies made me laugh so hard. It made me think of you. 😀
😉
So glad to hear Grace is doing better!! I was worried! Praying for continued health and strength for you all! God Bless!
Thank you! Hope you and your family are doing well. God bless you, too!
[…] was very sad since can’t eat anything or talk. But she was happy that she got to see my daughter Grace. It’s been a long […]