Thursday, December 27, 2012

Merry Christmas

We hope everyone had a happy and healthy Christmas and wanted to share a few of our Christmas Eve and morning photos.  Stephen had an awesome Christmas this year and it was even better because we spent the entire Holiday at home!!  Bill's parent's spent Christmas Eve and Christmas morning and then parent's drove down from PA to spend Christmas night and a few days with us here in Virginia.  It was wonderful to have the space to have lots of family here with us and also have a place for all of the loot Santa brought Stephen.  We hope you all had a wonderful Holiday as well filled fun and laughter with family and friends!!

Wednesday, December 19, 2012


So sorry I forgot to update the blog after we got home on Saturday afternoon from the hospital.  I updated Stephen's Facebook page (, but forgot to update here as well.  As I mentioned, we got Saturday afternoon after much push to be released from the hospital.  We hit a few snags with trying to be discharged, but in the end, they were able to get an ultrasound of Stephen's mediport and it showed no clots in his veins, so they let us go.  But just like the last admission, there was no source of an infection found or any reason as to what was causing the high fevers. I contend it was a GI bug, in addition to the cdiff, that caused it, but there's no concrete proof.  But we're back home and he's doing fine.

The only downside has been though that he's finally got the typical c-diff symptoms with diarrhea.  Which is a huge bummer, but he's staying hydrated through his g-tube and is still eating lots of ice, so that's helping as well.  But there have been A LOT of diaper changes since Saturday and A LOT of laundry washed and A LOT of bleach being used around the house.  I think I need to buy some stock in Clorox at this point!!

For now it's just wait and see if the fevers come back and hopefully we'll stay hospital-free for a while! At least until after the New Year and somebody's 2nd birthday!!!

Friday, December 14, 2012

Back in the hospital :(

Unfortunately, Stephen is back in the PICU.  He was doing great and totally back to normal after being discharged two weeks ago, and then BAM! he spiked a fever back up to 104 Thursday morning.  When he first woke up Thursday morning, he was totally fine, but by 9AM he was pretty fussy and during his physical therapy session Thursday morning he got more upset, more hot, and more tired.  As soon as we were done, I took his temp and it was over 104.  And of course, because of the possibility of an infection, we were told to go to the ER.  And just like two weeks ago to the day, they ran every possibly test, which meant we would be staying at least one night.  And just like the last time, there was no room in the Intermdiate Unit, so we were shuttled off to the PICU.

The bright side has been that we got a great room in the PICU with a bathroom and a semi-comfortable sleep bench.  And it's slightly larger than the other room, so at least it's more comfortable.  But Stephen's fever broke last night and he's now totally fine.  So we were pushing to have him discharged today, but that didn't happen.  There was some mishap with an ultrasound technician that was supposed to take pictures of Stephen's mediport, and since that didn't happen, it'll have to be tomorrow morning.  

And just like last time, none of the cultures grew anything, so no infection was found.  I honestly think he's got an intestinal bug of some sort on top of the c-diff that's causing the fevers.  Next time, I think we'll try to some tylenol at home first before heading straight to the hospital.

But for the time being the boys are having a sleep over in the PICU (I stayed at the hospital last night) and I'm down the street bunking up with my parent's at a local hotel.  A hot shower and a soft pillow are set in my sights.  Hopefully tomorrow I'll be able to update that we're on our way home!

Wednesday, December 12, 2012

Still Positive

Good and bad news today.  Let's do the bad news first and get it out of the way.  Stephen is still positive for cdiff.  I've found that the more all of this stuff drags on (transplant, cdiff, communication break down between patient and doctor) the angrier I get about all of it, so I've had to give myself a couple of days to post anything or I start to sound like a nasty ol' you-know-what.  You should see some of the posts I have written but never posted!  But the bottom line is Stephen still has cdiff, which means he can't get a transplant.  I got the call on Friday evening that he tested positive again and we finally got a plan in place Tuesday evening.  Stephen will do another 14 day course of vancomyacin four times per day (like we did before), and then it will taper down to twice a day for a week, then to once a day, and so on.  It's called a vancomyacin taper and this hopefully do the trick.  If this doesn't work, there's one more "experimental" drug we can try and then he'll have to have a stool transplant.  It's super gross, so I will spare you the details, but I think you can probably figure out what the means.  The entire vancomyacin taper is 6 weeks and then we'll test him again.

The good news among that is that Stephen is eating cookies! Chocolate chip, oatmeal raisin, and sugar.  And also ice chips like crazy! He actually rode around the grocery store in the cart on Sunday night munching on a cookie shouting "HI!" to every person we walked past.  It's the cutest darn thing I've ever seen!!  He really is just getting cuter and cuter by the minute and forming such a little personality and he just makes my heart melt.  He's so affectionate (except when throwing a typical terrible 2 tantrum) right now and started actually giving kisses the other day!!  And even though he's struggling a bit to verbalize what he wants and needs, when I give him instructions on things to do, he's able to really follow them.  Including hanging the little stockings each morning on our advent calendar!  Oh and the thing that's the most evident is that Elmo is the coolest thing existing in Stephen's world right now.  He cannot get enough of that crazy red little creature!  I just heard about this Christmas Town at Busch Gardens today at work and it apparently has a whole Sesame Street theme, so I think we might just have to take a trip down there to visit Elmo!!

And we had dialysis clinic this morning and everything went well, so that's also good news.  They made slight changes to his dialysis regime to accommodate his growing body and to his formula recipe.  But other than that, everything else is status quo!

Saturday, December 1, 2012

ICU Update

For now, we have good news! None of Stephen's cultures have grown anything and his blood work yesterday and today was good. Nothing that sounds off any alarms at least. But the mystery is still how he became so anemic, so fast and so sick. And why his blood cell counts haven't bounced back to normal despite receiving a blood transfusion on Thursday night.

Today they did an ultrasound of his liver and spleen to see if maybe the liver disease he has, Caroli's, has something to do with it. Hopefully the results of the ultrasounds will be back later tonight and those will also be just fine. But in the meantime, the plan right now is for Stephen to go home tomorrow unless something crazy pops up on those tests.

But the biggest news of all is that Stephen had a negative cdiff culture yesterday! It doesn't mean he's out of the clear with the cdiff, but it's a step in the right direction. He'll ultimately need three negative cultures to be considered cleared if the cdiff and back on the transplant list.