Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Tuesday, May 12, 2009

Fighting Hard

Poor Bella.  One of the effects ( I guess the word is) of DS is that it’s hard to sedate these kids.  Bella has been on fentanyl and Versed for so long that their effectiveness is limited.  They don’t want to paralyze her (norm trach protocol till that wound heals), because they can’t properly sedate her – and it’s cruel to be paralyzed if you aren’t sedated.

So she is receiving a lot of PRN meds.  The doctor is starting Methadone in addition to the others.  We’ll see.  I wish I could take away this pain from her.

My doctor gave me Erma Bombeck’s, “At Wit’s End For Chosen Mothers.”  I thought it was sweet of him. 


My name is Sarah said...

This is Joyce. Do you have music in the room for her? If not, you may want to try it. We brought a portable player and childrens lullabies in for Sarah. It helped calm her so she wasn't trying to fight the trach at first.

Lacey said...

what a nice doctor, and I'm so glad their thinking of her when they won't paralize her without proper sedation. Thats just mean. I remember one time they paralized Jax to put an art line in, and he was crying under the paralidic. I screamed at them to stop. I agree with Joyce, music is a great idea to have in her bed. Jax loves the baby music or even birds and white noise.

Anonymous said...

Hey there! My son has the same issues. You might want to ask about using Ketamine if she really needs sedated. That is about the only thing that will work for Christopher anymore. Supposedly it makes you hallucinate. What do babies see? Chrsitopher would just wave his hand in front of his face for hours and laugh. :)

Keeping you all in our prayers
Steph and Christopher in IL OurLittleMan

mommapainter said...

Little Bella... Hopefully they can get something figured out to help her be more comfortable. I can't wait to hear what you think about the book. What a sweet DR. We'll need to have a ladies night in 3 weeks!!!!!