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November 18, 2012
We are home!  Lucy is not great, but there is really nothing that they could do for her there that we can not do for her at home, so we came home around bedtime last night.  We left with no real answers to why she is sick.  Cultures are still negative, which like I mentioned is not necessarily a good thing.  We took her off of antibiotics because we don't have any proof of an infection, yet.  If her fevers return so will we.

Lucy had a CT scan of her belly yesterday, we were looking for answers as to why she is experiencing increased abdominal pain.  Let me just brag about our girl for a moment, she did great in the scanner or giant donut as Dr. R told her it was.  He told her not to eat it, she thought that was funny.  They were worried that she would need to be sedated, but I knew she could do it without sedation and she did.  Ultrasound, now there's a test that the girl should be sedated for, ugh...not sure why but she hates it.

The results from the scan showed us that her bowels are in bad shape.  She has areas that are are narrow and areas that are dilated and fluid filled, indicating organ failure and no motility.  Lucy is in intestinal failure, that we know, the scan showed us just how severe it is.  Dr. R came in and discussed this with Drew and I, I knew it was not going to be good news when I saw the look on his face.  We discussed not being as conservative with the pain meds, she is in pain, and as we could clearly see on her scan needs meds to be comfortable.

Everyone who took care of our girl this week agreed that she is just not the Lucy they are used to seeing, and that she is just a wee bit more irritable than her norm (insert sarcasm here).  We are going to do our best to try and make her as comfortable as possible.
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Susan said...

Ug! I didn't check your blog for a few days and just caught up on your last few days of stress, sickness and questions. So sorry to hear all this. I wish I was in a place to do more than pray, but Kylee and I are currently sitting in CHOP for a few days while she fights off the rhinovirus and parainfluenza. Her O2 stats were a little low, but are looking much better on oxygen here. Hopefully we won't be here for too long. I'm getting just a tiny taste of your life, but with no where near the level of severity. Praying for you all, especially that you won't have to be readmitted! Please keep us posted.

Kristina said... least she's home. I'm so happy for that! She continues to be in our prayers.