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

Friday, May 29, 2009

Sweet Girl

Poor girl.  As her Attending said this morning, this isn’t going to be a normal round.  There will be many ups and downs with Bella.  Amen.  They always come back to Down syndrome and twitchy vascular bed/ air way. 

Yesterday she started desating, her respiration rate went way up, and she was tachy (heart rate up).  We tried everything morphine, holding, re-positioning, increased oxygen.  She finally got through it and went to sleep exhausted.  She did that twice yesterday.  She has done it again today.  The poor baby.  I hate to see her crying – silent tears break my heart.

She is pretty miserable.  She looks like she doesn’t feel good.  She is warm, but not all the way to a fever.  Poor thing.

May 29 003

As far as her belly and the Nitric, pedi surg is glad that things are looking better -  so is infectious disease – so they are going to let her try half strength formula at 10 cc’s an hour.  They are cautious.  The critical care doctors are trying to increase the protein in her TPN.  You can’t gain weight on a lot of precaution, and she really needs the nutrition.  Since she has increased oxygen needs, there will be no Nitric weans today.  We are just going to sit.

And since she is out of the ICU, OT and PT have been ordered.  They stopped by to assess her.  They will be working with her daily (M-F).  She definitely needs it.  We had to stop and suction in the middle of everything, but that’s OK.  That’s life with a trach.  She seems to be developing an oral aversion which does not surprise me considering all of the tubes and plastic that have been shoved into her mouth, nose, and airway the last 7 weeks. 

I love this picture!  Doesn’t she look like she’s ready to pray?  :)  This is her one trick – she can bring her hands to the midline – wahoo!

ptot may 29 001

2 comments:

Lacey said...

She looks beautiful, she looks like she's ready to come home. Hopefully they get things figured out so you can get there.

maniamam said...

I love the praying picture. She's taking matters into her own hands. Love, Krystal