Monday, March 26, 2012

Update 3/25/12

Piper isnt good at consistency...but really, isn't that why we love her so? Because she embodies resiliency and hardships and always within the same situation. Piper is never given the easy hand and she never lacks for struggles but this girl is stronger than we realize and each time she has a bad day it just makes the good ones more special.

And each time she falls down we just wait for her to pull herself back up again and keep us on our toes again...

She never fails us.

(not unlike the God we serve)

After a rough day where it seemed we were heading back down the same path we had just left, Piper is again improving. Her night nurse called her "amazing" and the doctor who is attending now said she is doing all
The "perfect things in the perfect times". All good things in here today.

That makes me not want to throw up and I spend a lot of my moments either crying, praying or wishing I could puke.

So that's nice.

In the last 24 hours she has rid herself of most of her fluids to the point where they are only giving lasix every 12 hours rather than an all day drip. Pipers vitals are all consistent and healthy, she is off of all blood pressure medications as well as the vec (paralytic), and her NG feeds have been raised to 15mls an hour as her TPN is being lessened. Her plethora of antibiotics have continued and will do so until her counts recover which is normal. Because they are attempting to wean the nitric oxide and the oxygen she's been given Viagra. Yes, you read that right. Apparently it helps with pulmonary hypertension which is part of the struggle she will be having in breathing independently and we are already seeing it work. Pipers oxygen and volumes have been lessened and she is taking most breathes on her own accord...the goal is having her off the ventilator by the end of the week. Piper is still receiving Versed for sedation but is being weaned which means she was able to stay awake today and even read a book with me and watched a movie with Linley. When she requested the iPad I knew we were on the right track and while she is very shaky and weak she is attempting to communicate and is giving high 5s and doing the hand motions to The Wheels on Bus. A care package with girl scout cookies were a big hit with both of my sweet girls.

And that does my heart so good.

The main issues we need prayer for are the fever she began tonight, the bedsore she has on her neck/head and the major itching she is having...we also need to see her counts recover. Once they do so she will have a bone marrow aspirate and the results will be able to tell us what and when the next step will be. Piper was not able to receive the full course of IL2 and her NK cells were cut short by the addition of the steroids last week...all efforts that literally saved her life but I still am fearful of what the leukemia will do.

Leukemia is a beast and the goal remains to rid Piper of it. For good.

As Piper has been moved from "unstable" to "stable"' to "thriving" I am all too aware of how gracious God has been. We do not deserve the goodness that another day with Piper brings but we praise God that He has given it.


  1. You guys are such an amazing family! It's so hard for me to see the pictures of your sweet baby with a feeding tube and you guys are SO strong! Praying for the fever tonight- and that the beast goes away!

  2. I am so happy to hear that Piper is doing better.I am continuing in prayer for her & your family.