Good News/Bad News

The good news is that Friday's appointment with our neurologist, Dr. Francis Filloux went very well. Cassidy's EEG looks as it should following a craniotomy. Her brainwaves are all moving in their expected patterns. He said that recurrence of a seizure would be highly unlikely but not impossible. He told us from his standpoint he expects her to make a full recovery, and suggested weaning her off the Keppra medication over the next 2 weeks. YEAH!!!

The bad news- her C Diff has come back! Early last week she was showing symptoms again. We had quit the antibiotic on Friday and by Tuesday I was on high alert. As I stewed about it Wednesday morning trying to decide what to do and which doctor to call, I received a call from our Infectious Disease doc at Primarys- Dr. Anne Blaschke. She was just calling to check on Cassie. It was 100% providential. She has been amazing and has really been there for us. We know she really cares and is invested in Cassie's recovery. I told her what I thought and she called in orders for another stool sample and a prescription. Apparently in 30% of cases it will recur 3 to 10 days after stopping the antibiotic. So we fell right into that category and lab results confirmed. Same drug but larger quantity this time around. Still every 6 hours. Here we go another 14 days- from Wednesday.

It seems to have kicked in finally and her diapers aren't as tragic and quite as frequent. For a few days she was inconsolable every hour or so as she was cramping and basically had battery acid-type stool eating away at her skin, no matter how fast we changed her. This is really not an infection to be wished upon one's worst enemy. Thankfully she is eating ok again and we are trying to get her to rest as much as possible. She was given a blessing and we are very hopeful that this round of drugs will do it for her. GO CASSIE!!!

Feeling Brave

Don't let these pictures, fool you, it's been a rough couple weeks over here but things are looking up, and I'm finally feeling brave enough to post again. Cassie is responding well to the antibiotic, Metronidazole. She's been taking it orally every six hours round the clock, so safe to say I'm still pretty much a walking zombie- but ok with that. When she was in the hospital I remember walking past her empty crib at home so heartbroken, I'm just glad we are home getting better, not in the hospital getting better! Today is day 14 so we are anxious and hoping that she will still be good when we stop the med tonight. We have pretty much been shut-ins since coming home from the hospital, as we are trying so hard to keep her healthy. It's unnerving to know her immune system is not where we want it, and there are concerns about getting her off and keeping her off antibiotics for a while going forward, so we really don't want anything yucky over here. Her body needs a break from the antibiotics!

She is happier these days and her appetite has come back, as her symptoms seem to be subsiding. Her favorite foods are cheese, chicken nuggets, and chocolate milk. I give her dozens of snacks a day- pretty much whatever she wants, whenever she wants. A funny thing- the other day she picked up the phone and started babbling away, ordering chicken nuggets and such, just like hospital room service. We ordered a lot of meals that way- and she never really ate any of them...man they charged a lot for that food.

Our PT/OT visits have been less frequent because of her illness, but we have had it a few times and are looking forward to continuing. She has been doing awesome with therapy and we are so pleased with her left hand. It's really a miracle the way it's coming back. Her neck needs some strengthening so we are working on that, but she is looking good!

Today she had an EEG to study brain waves, in preparation for our end of month visit with the neurologist. We are hoping to get her taken off the anti-seizure med that she is still taking twice a day.

The visit went much smoother then I anticipated. We were instructed to keep her up 2 hours later then normal last night, and wake her up 2 hours earlier then normal this morning- that was fun! She was so agreeable though and I was really proud of her. She is so so brave. Going back to the hospital is so unsettling for both of us, it's a strange feeling- we lived there for so long, and now just really want to close that door, while at the same time feeling so grateful for the hospital and staff who are now part of our lives.

So they hooked up electrodes all over her head-(I told her they were doing her hair) and taped them all in place. (And sadly I forgot to take a picture!) She lay there quietly while I read lots of stories. Then they wrapped her head with a turbin-looking bandage, turned out the lights, and told us to sleep. I laid with her in the bed and amazingly within minutes she was sleeping! They watched and recorded for about 30 minutes, then came in and flashed strobe-like lights- super annoying- at her while she was still sleeping. It was an interesting process. She woke up and said "I want to go home" and we did! They pulled off the sticky tape-which she hated, and then they gave her 3 blankets and a pillowcase. Seriously. I guess it was a slow day and they felt the need to shower her with donations. She is super cute and she even said "thanks." She was quite pleased. Sorry it's taken so long to be brave, we sure appreciate your love and concern!

Junk in the Trunk

RARRRRR. Cassie has had flu-like symptoms the last couple days, and lab results have confirmed that she has C-diff. (Or Clostridium Difficile). It's a yucky bacterial infection in the intestines. It can surface during or after extended antibiotic treatment, because the good bacteria was killed along with the bad, and now C-diff has taken over. It's so gross. The poor thing has been throwing up and has big time diarrhea. For a while yesterday she would wretch and poop at the same time. I didn't know which end it was coming from. It saddens me/angers me to have a sick baby still. I want this to pass quickly. I am feeling a little bit bitter to be honest, but glad we caught it and are on antibiotics. We hope this first series will take care of it. C-diff has been known to be hard to treat. Remember praying constantly for Cassidy Allen back in the day? Turns out she still needs you...

Tubby Time

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...

Cheeseburger Celebration!

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!

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.

MRI Results

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....