Saturday, January 29, 2011

Day 10

I KNOW...

I am really, really, really bad about all this updating stuff. And you were all so good to pray that scary little something or other out of my sweet Pipers hip...thank you.

Like Chad said on Thursday night, I came down with some sort of funk of which Piper could not be around so my mom took over a night and I got to hang out with my favorite 5 year old ever. Apparently Linley and I had the "best day ever" because I was home and able to visit her class and she misses calling me mommy...melt my heart Fancy Face, just melt it away.

And so, here is the low down on all things Piper:

Pipers CMV levels came back and they have dropped from 5 million to 500,000 in only a week which is very good. She apparently is experiencing re feeding syndrome, a rare situation that affects children who have not consumed enough calories in the recent months and have a hard time readjusting to digesting their food. That combined with dealing with the CMV (which targets intestines) has made for some serious diarrhea. In an effort to allow her body to rest, they began her on TPN which is nutrients that go into her port and do not need to be digested but still help nourish her little body. She is still drinking some Pediasure and snacking and receiving a very slow drip on NG feeds overnight to gradually get her body to learn to digest.

She has begun spiking fevers but none of the cultures taken have grown anything yet. Around the same time she began to have decreased oxygen and subsequently a rapid heart rate. This is only happening when she sleeps so she is only required to have the oxygen mask at night. She has received a blood transfusion and a platelet transfusion in the last 48 hrs. Pipers UTI has cleared up totally. She has gone from 5.7 kilos at admission to 6.77 today...some of which is fluids but not all. There was some concern that she was taking in too much fluids and not ridding her little body of them so a chest XRAY was taken to see if there was any fluid in her lungs...and there is not. Somehow though she has some sweetly swollen ankles and feet.

Lets see. She was allowed to leave the room tonight for the first time in 10 days. Hopefully this week she will be getting some physical therapy to add to her occupational therapy. Her little legs are all but useless from being unused, not only the last 10 days here but the gradual decline we were seeing at home as well. Pipers ANC is still rock bottom but today her blood work showed neutrophils, which indicate that her blood counts are finally on the rise. Amazingly, today was the first time I have seen her laugh and play since at least October. She is a little puffy, she has beautiful bed head but she was sitting up on her own and playing and being silly and snacking and I am beginning to hope that perhaps we are turning a corner...perhaps.

A lot of this is very hard to see, especially as she is dealing with so many different issues, some which coincide and some which we have no idea what is causing them. Its a little overwhelming but I am confident that she is in good hands, both with her nurses and her God. One of my biggest concerns at this moment is that the doctors made the unanimous decision to hold Pipers chemo for a week or so in order to allow her body to heal. This is frightening to me as that beast leukemia is a stealthy one and I pray that irregardless of not receiving the chemo, that somehow it still continues to die.die.die.

And until these issues begin to be answered we are settling into room 194...although I did put in for a room change because there are about 14 male workers outside showing off a little too much crack for this G rated hospital room and the blinds to the hall do not work, making me wonder at times if the rest of Aflac have up and left myself and Piper alone. Isolation is for the birds but I believe that I have stated that one before. And probably will again.

Thank you to everyone who has blessed us with meals, childcare, visits, money, cards, coffee, Trader Joe's wine, gift cards, toys, laughter, prayers, and anything else that I am certain I am forgetting to post here but have not forgotten to appreciate. You guys are amazing...I only pray that someday my life is simple enough that I can be the one helping out. Thank you!

3 comments:

  1. Great update. Thanks Susanna! My prayers and thoughts continue to stream out your way.

    ReplyDelete
  2. Gosh, so much going on! Hang in there!! I'm glad you & Linley got some time together, but also glad you're feeling better!

    ReplyDelete
  3. Sweet, wonderful lady i have been reading this verse that stands out... For it is God working in you giving you the desire and the power to do what pleases him... Be strengthened and Piper be healed by the stripes of our Lord Jesus Christ!

    ReplyDelete