Well two big updates.
1. Tonight is Caleb's first night off TPN (IV nutrition) and he is on total gut feeds via his g-tube(feeding tube). We are praying that Caleb can tolerate this change and not run into any issues like when we tried to get him off TPN before. Nervewracking and exciting.
2. Tetanus response: Well it wasn't the results we were hoping for. Dr. Markert let us know today that Caleb had a small response to the tetanus and she suggested doing another shot(two months after origional was given-so around the 20th of this month) and then doing lab work a month after the second shot is given and see if there is a response. She said some of these kids may have to do up to four shots to get a response. So. . .I guess we will see what happens as far as a response to the next tetanus.
Thanks for checking in on us!
God Bless Caleb!!
Caleb was born with two rare syndromes, CHARGE and DiGeorge. Caleb is the 6th person in the world born with both syndromes. CHARGE is a multisystem-effecting syndrome which can cause several severe anomolies. DiGeorge prevented Caleb from developing an immune system. He spent over a year straight in the hospital, had multiple surgeries with a possibility of having more in the future. This blog details his heroic journey and story. God Bless Caleb!!
Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"
4 comments:
I hope the night went well. We will be praying!! I am sorry you didn't get the results you were hoping for on the shot, but we will be praying that the next one shows more of a reaction! We love you and miss you so much!!!!! Kisses for Caleb and big hugs to you!
Love-
Jen
Thanks for the update. I follow your blog but don't always write. I'm hoping for good things off his fluids.
That's exciting! Hope all went well. Will be anxious to hear all of your updates. I had an email from Simi today and saw you as a friend on her Facebook page - instantly takes me back 20 years and what good memories!
Chris
XOXO
Hey ugys.... he looks WONDERFUL! I am so excited to hear he is off TPN and doing so well. I pray that things continue to go well and we start seeing some good movement!!!!!! Keep up the good work :-D
Tori Powell, RN
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