Sorry, no pictures today. The new rechargeable batteries I bought for the camera aren't working.
Dani Jo has done well today. She did much better last night after they switched her back to the hospital vent. We met with the team of doctors this morning. I felt like we made some considerable progress in our meeting this morning. I voiced some concerns I had about the way things had been handled over the past two weeks. Some of the nurses voiced some concerns as well. We all felt well about the meeting. The doctors have contacted Dr. Ruben (pulmonologist that will manage Dani Jo's case when she goes home, CCHS expert) to get some input into the proper ventilator settings for her on the home vent. We are going to try to correct desats initially by gradually modifying her bpm settings as opposed to greatly increasing her oxygen levels. They restarted her feedings again today. She gobbled down 30 cc pretty quickly for lunch today.
A special thank you to Jake (Respiratory Therapist) for all your help with Dani Jo and for teaching us all about the ventilator and its settings.
Kudos to Karen (nurse today) for all your love for our little girl. We love the way you love on her when we are not here to do that. Karen also wins the Golden Enima Award for successfully performing this procedure and not waking Dani Jo up the entire time. (Your trophy and certificate have been ordered.)
Jennifer B., thank you for your post. You can sing Jesus Loves Me to Dani Jo anytime you want to.
So, overall, today has been a pretty good day. We are looking at surgery on the large intestine in about 1.5 to 2 weeks.
Thank you all for your prayers.
The Hearl Family
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5 comments:
I am glad to hear that things are getting a little better..and you got some questions answered....hopefully she will be coming home soon...she has really grown...when I saw the Video of Jordan loving her little sister--I just cried...that is priceless...thanks for the updates and hope your family had a very nice holiday...we will continue to pray for Dani Jo..
Gloria..(tessa's aunt)
Hey Dani Jo,
I'm so glad you had a better day today. Me and Wu-Wu stayed with Jordan and Jamie today. We had a good time playing and I read some books to them that your daddy had when he was a little boy. When you come home, I'll read to you too.
Tomorrow is Jordan's birthday! She will be a good "Big Sister" to you when you come home, and so will Jamie.
I love the pictures that Daddy posted yesterday. You are so beautiful!
I pray that you will have a good night tonight. You be a good little girl and grow strong, so you can come home soon.
Good night...sweet dreams...I love you.
Nanny
Joey, Amanda, & Family--We check this blog daily. Things seem to be headed in the right direction now. We love you all and are praying for your beautiful family.
Love,
Lee Ann and Billy
Dani Jo,
I missed you today. I wasn't feeling too good and did not want to risk getting you sick. Hopefully I will feel better and be able to come by to see you Friday. I hope you are having a good day. I love you.
Love,
Aunt JennJenn
Hey Joey, Amanda, Jordan, Jamie and Dani Jo,
We missed your call last night but we love you and we are thinking about you. We will call soon.
Love you,
Maria, Brad, Sofia and Zoe
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