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We got our first experience cleaning the trach this afternoon. I guess we did ok. Lori (nurse) said we did a good job. We've still got a ways to come before we go home, but at least we are getting started.
Dani Jo has done very well since the surgery on Monday. Her sats (oxygen levels) have been great. She looks really good. She is still sleeping a lot because of the pain medication she's on. We did see her open her eyes for a few moments this afternoon.
I have posted a few pics of Amanda and I cleaning the trach. I've also posted a short video of her sleeping today.
We got a surprise visit by Cole's grandparents this afternoon. (The grandparents of the little boy with CCHS). Cole's family has been a great source of inspiration for Amanda and I. We can hardly wait to meet Cole tomorrow morning.
They did a biopsy on Dani Jo this morning. 20% of all CCHS kids have a bowel disorder called Hirshsprung's Disease. They don't think Dani Jo has been because she has been stooling so well, but they just want to rule this out. Results of this test will probably take a week or two.
That's it for now. We'll try to write more later.
We love all of you,
Joey, Amanda, Jordan, Jamie, and Dani Jo
Dani Jo has done very well since the surgery on Monday. Her sats (oxygen levels) have been great. She looks really good. She is still sleeping a lot because of the pain medication she's on. We did see her open her eyes for a few moments this afternoon.
I have posted a few pics of Amanda and I cleaning the trach. I've also posted a short video of her sleeping today.
We got a surprise visit by Cole's grandparents this afternoon. (The grandparents of the little boy with CCHS). Cole's family has been a great source of inspiration for Amanda and I. We can hardly wait to meet Cole tomorrow morning.
They did a biopsy on Dani Jo this morning. 20% of all CCHS kids have a bowel disorder called Hirshsprung's Disease. They don't think Dani Jo has been because she has been stooling so well, but they just want to rule this out. Results of this test will probably take a week or two.
That's it for now. We'll try to write more later.
We love all of you,
Joey, Amanda, Jordan, Jamie, and Dani Jo
10 comments:
Don't worry, Joey, you and Amanda will be pros at this before long! Dani Jo is so beautiful! I can't wait to see her again on Friday when I get off of work!
Aunt JennJenn
Hey, just stopping by to check up on Dani Jo, we are glad she is doing well. Dani Jo is beautiful.
Alisha and Andra
Hey Dani Jo,
I see that your Mommy and Daddy aren't wasting any time learning how to take care of you when you get home! They want to be sure they know how to do everything just right.
I'm so glad you had a good day today.
I asked God to keep you safe and give you a good night tonight.
Good night...sweet dreams...I love you.
Nanny
Good job Joey and Amanda !!!! Pretty soon it will just become normal and easy for you to take care of. I know you both, and if it can be done, you two will do it. Dani Jo is soooo beautiful. We all love you !
Joey and Amanda
Dani Jo is so beautiful!
She is a fighter.
I wanted to let you all know that I love you!
All of you are in my prayers.
Love
Barbara
Praying for you and all your girls. God is good. Keep that faith stirred up and know that we all are believing and praying for even better days ahead.
Joey, Amanda, and girls-- Just want to know we log in every morning to this site. We love you all and want you to just hang in there. God knew what he was doing when he gave Dani Jo to your loving family.
Lee Ann & Billy Collins
Amanda and Joey,
You look like true nurses!! You all have been so tough that I am proud of you. You are in our prayers. Dani Jo is so cuteeeeeee!!! Can't wait until she is able to be held.
Karen, Clint, and Kate
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