Tuesday, January 17, 2012

Still PICCing our Battles

Inquiring minds want to know, and YES Cassie still has her PICC line. Unfortunately after all our precautions, she has a COLD, and the virus is negatively affecting her lab results. Her docs are being extra cautious and keeping her on the Nafcillin for a while longer. We should know more maybe by end of week, but until she can kick this cold, her blood work won't look great. Boohoo. She has a pretty gross sounding cough, but it could be worse. Her mood is still really good and she has been waking up early every morning saying, "I want to watch Lion King." That's her latest movie of choice. Steve was asking why she always wants to watch a movie even though she really never sits around and watches it once it's started. It's called a habit. Nothing like Simba at six am...In fact I've decided she rarely sits, she is constantly on the move and getting into things. Seriously, she is such a busy body and it's so great! I am feeling old and out of practice as she terrorizes the house. And to be sure, I did age at least ten to fifteen years in the hospital, my hair and wrinkles are a testament to that. Somebody told me I looked really thin the other day, which I think they meant as a compliment-I don't know maybe not. I told them emphatically that I do not recommend the stress diet. Don't worry I'm snacking like nobody's business now.

Our therapists Shauna and Sunell are still coming four times a week and things are going really well. The big kids are off track so they are home to help. They like to be in on the secret that our "play time" is really "work" for Cassie. They love to trick her into doing "work."

I had a conversation with our patient resource manager from Primarys today about our bad discharge information regarding the outpatient therapy. She was very apologetic, but said she was really glad to get that feedback. I hope that will help other patients and their families in the future...my purpose was simply to educate. Had we not received that call from Aetna informing us about home health rehab our life would be very different right now.

Thanks to all who are still following our story and loving us through this.


  1. Taylor had in ear infection in November and got an antibiotic, which a few weeks later led to diarrhea. We're on week 5 of diarrhea and I've been whining about it! (He's finally doing better today). But as I've whined about it, I realize how lucky I am after all you've been through with Cassie and her picc and everything else. Makes my 5 weeks of diarrhea seem like absolutely nothing! Puts things into perspective. Hang in there girl! Still thinking of you everyday!

  2. Thank you for keeping us updated. I am sorry that it isn't moving as fast as you would hope. I pray she continues to improve by leaps and bounds. In the mean time, I'm glad you can have her home. :)

  3. I have been following (if not commenting) on your progress. I just wanted to say that I admire all the courage and determination that you have all had-not to mention strength! I also have been meaning to tell you that I have two really good friends that have gone through very similar battles with their children. Brain and Brainstem tumors. They both told me to let you know that if you EVER wanted to talk-they would be more than happy to chat. They said that for them-knowing someone who has been in their shoes were big helps to them. Let me know. Love you all.