Tuesday, January 24, 2012

"beautiful things"

Day 27.

Piper, proving me correct like the good little girl she is, is keeping the doctors and such on their toes. I told then she would and indeed, she is.

Yesterday Pipers fevers were continuing to run about 38.8 and though they were responding to Tylenol, they were frequent enough to warrant a CT scan to rule out fungus somewhere in her body...so this morning Piper and I were awoken at 8am to have this done with sedation. We got downstairs and they informed us it would be with contrast so back upstairs we go to have a NG tube placed. No two year old willingly drinks 10 oz of chalky contrast. So that runs for an hour and a half and then we wait an hour and she is taken back downstairs and the CT scan is done with no problems. Her nurse was able to come and do a port reaccess and CVL dressing change while Piper was sedated so that was a good surprise. They also chose to place an IV in her right hand because Pipers CVL is being wonky. And because Pipers CVL is being so very wonky she is having it pulled tomorrow and they are replacing it with a single lumen CVL...though I would love to have it pulled and only use her port, it is not advisable because they need multiple access spots for blood draws, antibiotics and TPN. One of her medications that she takes by mouth (cyclosporine) has to be monitored a few times weekly from a line that has never been used to administer it...does that make sense? So tomorrow Piper will have another surgery to have all this done. When you ask? Well, apparently "sometime between mid morning and mid afternoon". And that's how I found out that surgeons and cable men are really one and the same.

Eating is about the same. She continues to play and when they allowed her to be unattached to the IV pole for the first time since December 18th, she was loving it and did 3 laps around the halls with a smile under her face mask. We will have a ways to go to get her caught up with walking and movements but I am certain with time and some encouragement she will remember what she used to be able to do and will do that plus more. She has been fever free for 24 hours and should this stay the same it is one more step closer to discharging...and seeing my sweet girls together again.

All on all, more good days are happening. When I asked what Pipers counts were doing today during rounds, Dr. Haight said " beautiful things" and that has been resounding though my head all afternoon...I pray it is so and for always.

Because Piper can hardly go anywhere or do anything, she gets really excited to see familiar faces. She loves seeing Beth, Alyssa and even waves at Dr. Newton... these are all friends from Scottish Rite that she recognizes. But since being here for 6 weeks, she has learned to love a few new faces like Audra and Britney. And her favorite is The Fairy Godmother. The Fairy Godmother is a volunteer who has been delivering books and smiles for years at Egleston and I must say that I too, look forward to her sweet visits. She must have a soft spot for Piper because I know Piper has one for her.


  1. Beautiful things in the counts of a beautiful girl just made my day!!!!!!!!!!!! Thank you for sharing that great news. We continue to pray for sweet Piper all the time and can't wait to hear that she is out of the hospital, cancer free, and enjoying everything that life has for her. We will be praying for her surgery and for the "cable guy" to do a great job!! :) Love you all! Heather

  2. Oh how blessedly, beautifully sweet!! Prayers for surgery this morning! Xoxo

  3. Here's to a lifetime of countless beautiful things!


  4. Prayers are always with you. Just love the Fairy God Mother! I appreciate your blog. When I'm down, and life feels like it's getting overwhelming. I come here, read and re-read everything your family is going through and get reminded that my life is a breeze. Thank you.