Forgive us for showing a little skin(and my finger covering part of the second photo), but had to share that today Cassie had her first real bath since November 17! Josie joined her, and they had a marvelous time soaking in the bubbles. They played happily for almost an hour while I scrubbed the rest of the bathroom. Cassie was delighted of course, as she has always been a big fan of tub time. In her old life she was accustomed to bathing frequently, and even had multiple baths a day at times, because of the fact that she thinks of her hair as a napkin. So you can imagine the torture it was for her over the last few weeks, whenever she heard the bath water running and it wasn't for her. It was always tricky to keep her distracted, and to keep her clean for heaven's sake! So hallelujah for today and Hip Hip Hooray! (as she was chanting in the first photo). The simple pleasures in life we had so taken for granted...
Thursday, January 26, 2012
This is Cassie yesterday receiving her last infusion of our favorite drug in the world, Nafcillin. It saved her life. She has been on it since her second surgery on Nov. 29- so 8 weeks. She received cocktails of other drugs along with it, but Nafcillin was our warrior drug. Now we are all ready to be done.
Its official! The PICC was pulled today. We are all thrilled-seriously.
She is still on the Keppra, the anti-seizure medication. So next up EEG and neurology visit in February to see if we can kick that one to the curb.
Things are fantastic. Cold symptoms gone, we are in a good place right now. FREEDOM!
Tuesday, January 17, 2012
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.
Wednesday, January 11, 2012
Everything went great today with the MRI. Dr. Riva-Cambrin is really happy with the way things look. He said her brain looks just like it should a month after surgery, and there are no concerns there anymore with the infection. Her tumor looks good too- in fact he said it's hard to say exactly, but the remaining portion may look even smaller today. Miraculous. We will have another follow-up MRI in 3 months- again, thank you Aetna insurance! And yes, Steve, I will probably be a stress-case again in 3 months...
So "Diva-Riva" - (a pet name the residents call him) and our infection disease doc (Dr. Blaschke) will discuss when to stop the antibiotic and pull the PICC. We think that will be in the very near future. Cassie will have blood work done again tomorrow and we should know more then. We had a very good lengthy discussion with our favorite doc-and he is just really pleased with the way she is recovering, as are we obviously. We simply adore Dr. Riva-Cambrin. We know we were so blessed that he was the on-call surgeon when we were in need November 17. We have always felt that he has extended the very best of his skill and expertise, as well as compassion and communication. From the very first we have felt part of the team and respected. Who would have thought a neuro-surgeon would be down to earth and easy to talk to? Not us, but he is- and he is amazing! He told us we are due some "good karma" and that we should go buy lottery tickets. So signing out and headed to Wendover to try out lady luck......AS IF! We know we have already received a miracle and luck had nothing to do with it!
However, is it karma that she has taken a renewed interest in potty-training? I think so. On the other hand Diva-Riva guesses she'll want to keep her "soother" aka pacifier until she's twenty, after all the trauma she's been through. He also told us to be cautious with Cassie but not to treat her like our "glass child," and that it will be best for her to be able to "run with the pack." I would readily admit to treating her like a porcelain doll.
If you are still reading, wow, you are amazing as well. Some interesting things we have learned in the last couple weeks. Dr. Riva-Cambrin said Cassie's original tumor -removal surgery was one of the most complicated surgeries the hospital saw all year- WHAT?! And Dr. Walker, the neuro-surgeon with 35 years experience under his belt, told us twice he has never seen a case with more complications. We're glad they told us all this after the fact not during....
Tuesday, January 10, 2012
Here's some of our activities of the last few days. She is so happy and doing great. She is enjoying "dress up" and there's been a lot of singing and dancing coming from her. As you can see, she also got herself and stroller into the empty tub the other night. I think she really misses the bath. It's hard not to be able to bathe her- due to the PICC. And let the records show that her hair color is different! The surgical scrub they used during surgeries has officially stained her beautiful blond. She's more of a strawberry blond now. I have washed her hair a few times and it's not helping. A bit annoying and a bit funny.
Our therapy sessions have all been really positive so far and she's making progress fast. She cracks us up because she's always willing to participate in the different therapy "games" but as soon as it gets too hard or tiring she just walks away. Our therapists are so good at improv and moving from one thing to another. Two-year-olds aren't known for long attention spans...
Overall things couldn't be better. MRI tomorrow morning.
Thursday, January 5, 2012
Our little friend is doing great. Today we saw our infectious disease team docs and got a good report. Cassie's lab reports are looking good and her mood is fantastic. It was fun to show off her improvement- and let them see their knowledge and skill paying off. I thought they both lingered quite long in the exam room and just kinda happily stared at her. Cassie was not thrilled to be back. She was happy to see "Nemo" again (the fish display on the main level) and some of our favorite spots, but she got really upset after a while. Poor thing. She was very excited to exit the hospital and go "find the car."
We have an MRI scheduled for next Wednesday the 11th, and we are anxious for good findings. They will look at the remaining tumor, and the infection/inflammation of her brain. After that they should be able to tell us when she can stop the antibiotic and get the PICC line pulled. So that is our next big hurdle- we want a good looking MRI!
She is bopping all over the house and getting into things. I caught her heading down the hall with an uncapped marker in hand this afternoon- where does she find these?! She is teasing and silly and we are just loving it. Again, no feeling sorry for herself. I don't even think she recognizes the differences in her body. In a way her scars are good reminders to us of her battle and our journey. The word REMEMBER is very significant to me. There are several things that I want never to forget- and others that I hope will completely fade from my memory in time-things that are just too painful. Again, thank you for the love and support. It's touching that we are not forgotten.