Saturday, January 22, 2011


Piper is hanging out here at Scottish Rite. She was admitted on Thursday after showing a significant amount of weight loss at her monthly clinic visit on Wed. and a nice little jaunt to the ER on Thursday afternoon. Her blood pressure was extremely low, her heart rate elevated, her extremities cold and she was frighteningly lethargic. After about an hour of warmed fluids and beginning antibiotics we were transferred back to Aflac and from there it was told to us that her blood work taken on Wed was showing positive for Cytomegalovirus (CMV) and well as yet another UTI. Pipers ANC has dropped to neutropenic and we are still awaiting results on a flu test. Ugh.

The CMV antibiotics are pretty heavy duty for about 2 weeks and then a little less of a dose for another 4 weeks. This has the potential to be pretty serious but at the moment she is doing well. Pipers ANC being so low will make it difficult to fight anything off so we went ahead and had the NG tube placed in an attempt to get her little body stronger while fighting. So far she has pulled it out once BUT, she has kept her overnight feed down, plus all her feeds for today. We will be upping the amount given until she receives 24 oz over 24 hours and keeps it all in.

Once Piper got a blood transfusion she perked up a little and has snacked on some crackers and almonds. She is actually still drinking her pediasure so that's additional calories to the ones tracking their way down her nose. She wants to be super close to mommy and is not letting me sleep much at night but other than that we are spending a lot of time cuddling in bed watching Elmo, dozing, eating crackers and walking the parameters of the room. Unfortunately, because the CMV is intense for those who are immuno-suppressed, she has been placed in isolation and we cant even do our laps around the unit or our bi-daily visits to the gift shop.

So, that's what we are doing this weekend. What about you? We have been able to keep Linley busy with attending the Peter Pan play here in Atlanta, a sleepover here at the hospital and a running tally of fun loving babysitters while Mommy hangs with Piper and Daddy balanced work and classes. I miss her when I am here with Piper but she loves coming to visit because all the nurses go out of their way to let her know she is beautiful and wonderful. Plus, she gets to watch lots of tv and eat cafeteria food and that for a 5 year old, is enough to thrill.

And yes, I am bummed that Piper has had to have this NG tube placed. I am bummed to be inpatient but I am very thankful that there are options out there to help stubborn, sick little girls like her. Hopefully this will help her begin gaining weight, feeling more energetic and happy and get to playing, learning and growing as normal as possible. A night of good sleep would be a nice little cherry on top, if anyone is taking orders.


  1. thanks for the update. keep letting us know ways we can help..we want to come along side you any way we can. until then, we are all sitting on the edge of our seats praying for you and your little family!-heather

  2. Hey Susanna- Ya'll are in my prayers.

    -Janet Chasteen

  3. Praying for you all. Thanks so much for keeping us updated. MaryBeth

  4. Praying for you and wondering what had been going on!!! So very sorry to hear all of this but you didn't end up having to make that final decision, God did!! The tube is in and she is "eating"!! So very sorry that she is so very sick right now but so thankful for Aflac and the care that they lovingly give to you both.

    Praying more diligently,