Tuesday, May 22, 2012

This Girl's Not Taking Baby Steps!

Yesterday was a good day!  Lily has had so many cords and tubes attached to her, that it does my heart good to watch them slowly go away.  Before she left the PICU, they took out the central line that was in her neck.  Once we got to this step-down room, they took off the blood pressure cuff and only put it on when they needed Lily's blood pressure.  Before I left and let Dave take over, they took out the high pressure oxygen cannula.  Oh, that was a horrible one because it was so big and heavy, and the tubing pulled at the tape that was on Lily's face.  And Lily does not like tape to be pulled from her body!  They decided to leave the oxygen off completely since Lily's sats were high and said they would use it when she was sleeping once she needed it.  Well, little miss I'll-Show-You decided she didn't need her oxygen AT ALL throughout the night!  No cannula!!  Shortly after I got home yesterday evening, Dave texted me to say that they had also taken out the ng tube that was sucking bile from the upper portion of her stomach.  That left nothing on her face!!  (She also has a tube at her button site, taking bile from the lower portion of her stomach, just so you know.)  I didn't get it until this morning, but Dave also texted me a picture of Lily sitting up like a big girl. . .and happy about it!  I'll include that picture below!

These are big steps!  But they get bigger!

This morning, the PT came in.  She was very encouraging, saying that therapy should be able to continue (conservatively) and that she should still be able to attend Pattison's Summer Camp.  She had Lily sitting up, and after I told her how much Lily loves to stand, she had her standing, and Lily was making herself dance!  Is this really characteristic of a child who, five days earlier, had bowel surgery?!?

I think the best news is that since Lily did so well off of the oxygen (she was considered critical care because of her lungs and not the surgery), she might be transferred to yet another room--basically a step down from the step down.  :)  AND (drum roll, please!). . .provided she tolerates her feeds (which they started this morning), she should be able to go home TOMORROW!!!  What a nice birthday present that will be for her daddy!

Speaking of her feeds. . .they've started her on a continuous feed that will give her (I believe) the normal 5 ounce feed that we give her at home but within a four hour time span.  After they see how well she does with this, I believe they are going to try the regimen we do at home.  Wow!  (Honestly, I'm not sure if this is the best course of action, but we'll see.  It just all seems so fast!)

I think I should also add that Lily has been getting nutrition and not just fluids.  They put her on TPN feeds on Saturday or Sunday, but the nature of a TPN feed is that it bipasses the digestive process as it is fed straight through the veins, so it's much harder on the liver.  They've been drawing blood and checking various levels to make sure Lily is ok with the amount she is getting.  But with every formula feed she gets, they are able to decrease the amount of TPN feed.  Hopefully, we'll be TPN free soon!

I'm amazed!  What a strong little girl I have!  For those of you who have been praying, thank you, yet again, for taking your precious time to do that!  We are surrounded by your love and your prayers, and boy, is that a nice, comfy blanket to have wrapped around you!  

I hope to follow up with more positive updates!  For now, I hope you enjoy the pictures!


  1. Jill I'm so happy to see that Lily is doing so well with her recovery. She has the most beautiful smile!

  2. Yay! The photos are great and the news just as good! We are continuing to pray! :)

  3. Lily, you are so brave! I support you!