Sunday, February 26, 2012

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!!!

Thursday, February 16, 2012

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 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!

Friday, February 3, 2012

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...