Tuesday, March 27, 2012

Update 3/27/12

Not a whole lot of changes going on here. They have upped her Viagra and it seems to be helping her pulmonary hypertension a little bit. This mornings X-ray looks better both fluid wise and in that her heart has decreased a little. Her blood pressures are improving as well. Piper is still slowly being weaned from the ventilator settings and tomorrow they will be weaning the nitric oxide... This is the last step to go before taking the literal tube out of her throat and breathing alone. Her fevers are spacing out some; instead of every 8-10 hours apart, she last had one at 3:00 this afternoon, almost 15 hrs apart. They took her catheter out this afternoon after getting a urine sample to test for a Uti. She continues to be itchy but consolable and spends a lot of time playing with small toys in her lap or watching movies. Remember that she is still being given sedation medications and is still very groggy...even with this all going on, she has a pretty constant stream of nurses and doctors peeking in at her in amazement as she is reclining and playing. Piper is requesting water and we have been given the "okay" to put small amounts on her sponges used for oral care and to let her suck on them every so often. Doesn't thrill her but it's a little something. Piper still very much wants me to hold her and I don't know what's worse...when she cries when I tell her I can't or when she just turns away in resignation.

Neither should be an option.

It hurts me to see her like this and yet she is doing so much better than we thought she ever would last week.

So that's me whining.

The main issues will continue to be the weaning off of the ventilator and her heart condition. There is also the ridiculous balance of input and output and fluid gain that changes daily. Piper needs to have some counts come in and they have been very slow...please pray that when we do begin to see counts that they will be leukemia free.

This entire process is arduous and we are all wearily pressing on. We miss each other and nobody is actually getting good sleep...I constantly tell myself that this is just but a season but frankly, it's turning into a beautiful spring outside and we are missing it all.

As you can see I am whining and this is not allowable in our position. Piper is doing well and we are together (ish).

And God is still holding us upright.


  1. Been checking all day for another update - so glad to see this one before going to bed. You are not whining - just sharing the reality of what you are going through and how you are feeling. We are continuing to think of you always and pray for your precious, amazing girl. Praying for all of you too. Hope to hear she is off the vent soon and on her way to a regular room and a little more "normalcy" - whatever that is!!! I love you, friend.

  2. Sharing your frustration/wishes isn't whining. Our God is big enough to hear it all. May you continued to be blessed with more time with Piper and God willing a remission or better yet a cure.

  3. I don't know you personally, I found your blog a few months back from a mutual friend (two friends, actually) and can't stop reading. I pray for you and cry with you. And I wanted to encourage you today. This blog, anything you have to say...its not whining. Its journaling your thoughts. Those thoughts are a prompt for us to pray for you, and also an encouragement for everyone reading. You are an outstanding mother and person, and it radiates through this blog. Keep it coming..."whining" or not. We're praying.

  4. So glad that Sweet Piper is continuing to make improvements, even if slow! Will continue praying, praying and praying some more for all of you. You are certainly NOT whining, you are keeping a record of things and being honest about your feelings.

    Hopefully, it won't be long before you will be able to hold your amazing little Figher Girl tight and there there will be many more "springs" to enjoy with your beautiful girls and hubby.

    Thank you for keeping us updated, and remember it is NOT WHINING however, you have every right to whine.


  5. We are glad to hear Piper is making progress. I know the journey has been long and it is not easy. Your fatigue and frustration are understandable. We hold up your arms in our prayers, just as Aaron and Hur held up the arms of Moses.

    Hugs and prayers for you all!

  6. Hi Sus,
    Im not quite sure how I came across your blog but I have been reading it for the past month or so. My heart absolutely breaks that your little one is going through all of this. She seems like quite the fighter and I can't help but to think her and my little 2.5yr old are a lot alike. My daughter was diagnosed with A.L.L in Aug '10, went through chemo that didn't work, then a transplant which put her in the PICU for 2 months and them telling us she had basically a 0% chance surviving. She's here today and doing well. After all your daughter has been through (chemo, transplants) etc..she is still fighting! She is such an inspiration and such cutie! I will be praying for the weaning process off the vent to be a smooth process and when her counts recover there are no signs of disease!! I also hope the rest of you all can get some much needed sleep and rest. Easier said than done, I know:(


  7. Praying for complete healing, sleep and energy for you all. we love you so so much.\xoxo