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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, February 21, 2011

Question for parents of Trisomy 18 children

Just when we think we'll get a break, Lilly likes to shake things up. Last night Lilly threw up mucous two times. Her old "friend" deep congestion is back. (And yes - the kind that is too deep for even the amazing snot sucker tool.) She had about an hour during the night where she got really rattly and snorty sounding, and then it quieted down and she was breathing normally.

I know that other Trisomy 18 children struggle with this type of congestion some. So if there are any parents reading this that have a good way to help their child get some relief from it, I'd love to hear about it.

4 comments:

  1. praying for some answers to this post, Lilly!!!!

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  2. We are praying for you, Lilly! We use saline drops like crazy! Our pediatrician says we can use as much as we want. We use the drops right before we suction. We also pat Annabel's back to help break it up. It really does seem to help! When she is very congested we use saline drops and suction a lot..even when it seems like we aren't getting any snot out, we keep on and eventually it comes out. We also use a humidifier at all times and it helps to keep Annabel elevated when she is congested!
    Take care! -Annabel and Ava
    http://www.sweet-annabel-leigh.blogspot.com/

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  3. Can you try to get a suction machine? They work great. Our machine is called a DeVilbiss Homecare Suction Unit. Ask your pediatrician about it!

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  4. Lisa I will email you some ideas on what we have done with Caleb in the morning. Caleb just had a seizure...he fell back to sleep but now I'm up. Hugs to Lilly for me.

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