26 January 2011

1.26 Afternoon Update

(by Bethany from http://iamknittogether.blogspot.com)

Well it's another "step back" day. Maybe we'll get another "step forward" one soon.

Penny's chest x-ray shows still more fluid on her lungs, so they're having to not go down on her oscillator settings but go up.  They're also having to give her another round (her 3rd) of diuretics (Lasix) to help clear it out.  This is disappointing, but the doctor said he was kind of rushing her before and she's letting him know that she's not ready yet.  When her body is ready she will let us know.   We just have to be patient.  The good news is her second set of cultures still hasn't grown anything from the PICC line so it doesn't have to be removed.  That's an answered prayer.  She is going to have her 5th blood transfusion today because her hematocrit was low.  They are going up on her feeds though so that's another good thing.

Lydia was having more and more desats so last night she was put back on the oxygen canula.  Dr Ravi said to take it off of her this morning because it's really having no positive effect on her number of desats.  I'm in favor of taking it off..and so is she.  She keeps trying to pull at it. It totally doesn't go with her outfit.  She is also getting a blood transfusion today (her 1st as far as I can remember) because her hematocrit was 19, which is super low.  She's been making some of her own blood but not enough.  Other than that she's doing ok and they are increasing her feeds too.  We're hoping to get to work with the speech therapist today on getting her to bottle/breast feed. We're just waiting on the order to go in and to get scheduled with speech.

You guys have been so sweet to ask so often what you can do to help, and we've finally found something you can do!  We've been asked to get our friends and family to donate blood to LifeBlood on behalf of Penelope and Lydia to replace the blood they are getting. LIfeBlood is such an amazing organization that has provided just what our daughters needed when they needed it.  They can only do that if they have people to donate.  So if you have a spare minute and want to go by LifeBlood, just let them know that you're donating on behalf of Lydia or Penelope (not direct donating) and you'll be doing us, LifeBlood, and a patient in need of blood somewhere in Memphis a great favor.

OK...Specific Prayer:
  • Penny's  progress towards getting off the oscillator
  • Penny and Lydia's digestive systems to work properly with increased feeds (protection from NEC)
  • Lydia's desats to decrease 
  • Our discouragement 
  • the Doyles as they have visitation this evening and the funeral tomorrow
The Chus

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