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!!

Sorry!

So sorry I forgot to update the blog after we got home on Saturday afternoon from the hospital.  I updated Stephen's Facebook page (http://www.facebook.com/StephensJourney?ref=hl), 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!!!

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!

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!

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.

ICU

Oh how things change in a couple of hours. We're currently sitting in the hospital outside of the pediatric ICU. Stephen was admitted last night around 10pm for a suspected infection; somewhere in his body.

I knew he wasn't feeling well yesterday when all he wanted to do was lay on the floor or be held. Then he took a long nap and when I got him up, he just laid on the carpet. By the time Bill got home from work, he was pretty warm and wouldn't you know, he had a 103.6 fever and was looking really pale. So we took him to the ER and they started their battery of tests.

The first round of tests showed that there appears to be some kind of infection and he is very anemic. The infection doesn't seem to be in his dialysis fluid, but we won't know for sure for another 24-48 hours. And because Stephen is now aware of what's going on, it's very hard to figure out what hurts because any time the doctors try to feel his belly he freaks out.

Over night they have him Tylenol to break the fever, IV fluids and a blood transfusion. There was no sleeping because they poked and prodded him every hour, but they gave him some more tylenol this morning and he's sleeping now.

So now we're just in a holding pattern waiting to see what the cultures grow if anything. Best case scenario is that this is just a viral thing and they'll get him all tweaked up and we'll be home by the end of the weekend. Worst case; this is a blood infection or something that would cause them to have to pull Stephen's catheter. But I don't think it's the latter.

And of course in true Stephen fashion, Bill and I were planning to spend the weekend in NYC to celebrate his birthday with a show and dinner with friends. A much needed mini-vacation. But I guess Stephen just didn't want us to go without him, so we're all snuggled together in his ICU room instead. Maybe next year we'll finally make it.

Family Photos

As promised, I've got lots of awesome pictures to share!!  A few weeks ago, the wonderfully talented and generous Stephanie Ascari came to the house to take some photos of Stephen and the three of us.  I told her over the phone that I wasn't sure if we'd be able to get any good photos of Stephen since the last time I tried to have someone take his picture, he was very unhappy with me. But in true Stephen fashion, he proved me utterly wrong and hammed it up for Stephanie.  As you can see, these pictures were post-first haircut :)

You can check out Stephanie's work on her website at: http://stephanieascariphotography.com  

Or on her Facebook page at: http://www.facebook.com/pages/Stephanie-Ascari-Photography/153371198047307?fref=ts

My Apologies

So sorry for the lack of posts this past week or two; we've been without internet since Friday and I just got up and running again.  It's the worst possible week to lose the internet since I do 90% of my Christmas shopping online, but I guess maybe it's been good for the wallet :)

Lots of awesome pictures coming soon.....

First Haircut

We took Stephen on Sunday morning to get his first real haircut!  His hair and the curls on the sides were really cute, but it was getting pretty unruly and since he's almost two, we figured it was about time.  Bill had found a barber a few weekends ago in our neighborhood and had seen a lot of kids getting their hair cut that day, so we figured we'd give it a shot!

I wasn't sure how it would go and at first it was pretty dicey (Stephen wouldn't let the poor guy near him), but thankfully another Dad in the barber shop suggested I give Stephen a video or something to watch to distract him and that worked pretty well.  He loves anything on my iPhone, so that worked pretty well while the guy was cutting his hair.  But anytime he tried to get the trimmers near Stephen's head, he freaked out.  But I think the results are pretty good.  It's really short and I definitely miss those curls, but I do know it will grow fast and next time I might have him leave it a little longer on top.  But there's no mistaking that this baby boy is now looking more and more like a little boy!!

Old McDonald Had A...

Last Sunday we took Stephen to a nearby park that is a working farm (thanks Grandma and Grandad Schwartz for finding it) to see the animals and had some great photo ops!  Some of Stephen's favorite words and sounds are animals sounds and he didn't disappoint!  You can hear Stephen in the video "talking" with the rooster and the rooster talking right back all the while the cows in the pen next door wanted to get in on the conversation.  It was hilarious!!!  And it was actually a pretty cool looking rooster!






And here are some pictures of Stephen checking out the sheep; another one of his favorite animal sounds.  Lucky for us, this farm is only about 10 minutes from our house, so I'm sure we'll be frequent visitors to the Frying Pan Farm Park!

Halloween Pics

As promised, here are our Halloween pictures! Hopefully you can tell from the pictures that we had such a blast taking Stephen trick-or-treating for the first time. I actually think Bill and I might have had more fun than Stephen; well,especially when we tried to "force" Stephen to wear the lion mane. He was not a fan. But he definitely understood what we were doing and had fun playing with his candy. And he even ate some of a lollipop which was so cool (considering he doesn't eat a thing)! And we got a chance to meet all of our new neighbors. All-in-all it was a successful Halloween!


Sorry if the pictures post out of order.