Wednesday, March 26, 2014

Tests Done and HOME!

This was us today all smiles as we got back in the car (packed full with days of clothes, toys and supplies) at CHOP and headed home:

It was an early morning drive to Philly at 5am, but by 11am, Stephen had done blood work, had a kidney ultrasound, and was seen by the nurse practioner, nephrologist and psychology. It was a busy, long morning, but by the end, they all determined, that there was no reason to keep him and we could go home. Hallelujah!! 

As I thought, his creatinine wasn't as high when we did it today at CHOP (for some weird reason, it's always higher at the lab here in Virginia) and the ultrasound didn't show any blockages or unusual things with the kidney. His red and white blood cell counts are low and the lab noted his red blood cells are enlarged, but we/they think it's all related to the cellcept; one of Stephen's major anti-rejection medications. He's always had issues with the cellcept, actually. Last Summer, after transplant, it made his white cell count incredibly low. Eventually, he stopped taking it when he became positive for the BK virus, but once he was negative for BK, they put him back on it. And it's back to causing issues. So, over the next few weeks, we'll do some more blood work and talk about using a different test for kidney function, instead of creatinine, and possibly start a new medication in place of CellCept.  

But ultimately, the good news is that we are home and Stephen did so great today with all of his tests! Personally, I think the doctors also just wanted to put their eyes on him and see that he truly is looking and acting like himself.

You tell me, does this look like a sick little boy?! I sure don't think so!! (He was so proud of his Spring hat he made at school!)

Tuesday, March 25, 2014

Slightly Unexpected

Well, we have an unexpected/unplanned road trip to Philadelphia on the horizon. Stephen's lab work from last Friday was not good. His creatinine is high (double what it was a few weeks ago), and his hemoglobin and white blood cell counts are low. So the doctors asked us to hydrate him really well and repeat the bloodwork this morning.

The actual blood draw went great! Stephen was given a couple of tasks to help out the phlebotomist, and he was so distracted and busy chatting away with all of the ladies in the room, that there weren't any screams or tears! They did an amazing job!!

But two hours later, I was having the dreaded "bad lab results" call with his nephrologist at CHOP. Basically, his red and white blood counts are trending downward and his creatinine is holding steady at 0.6, so they want to admit him tonight at CHOP to hydrate him, do labs in the morning and an ultrasound of the kidney.

Knowing about the issues he's been having lately with anxiety, I was able to get the doctors to agree to allow me to hydrate him overnight at home through his gtube and to do bloodwork and an ultrasound outpatient tomorrow at CHOP. So even though it will be a 4am wake-up call tomorrow, at least we were able to buy ourselves one more night at home and a little more time to get our ducks in a row with work and packing before leaving for Philly. We are definitely going to pack a bag for a couple of nights (we've been down this road many times!), but hopefully, Mr. Stephen's kidney will cooperate and we can come up with an outpatient plan of care and avoid a hospital admission all together.  But I guess we shall see what tomorrow brings.

Sunday, March 23, 2014

March Happenings

While having dinner last night with some special friends, it was kindly brought to my attention (wink wink) that I haven't blogged since February 27th….oopsy-daisy!!  And I kinda sorta made a statement that I haven't really had much positive to say since someone has been a big stinker lately in the behavior department.  It's a running joke in our house, but in reality, not a whole lot has been happening with the little guy (in the exciting department).  He did get better from his fever, then he got a head cold, and a little GI bug, and then the cold settled into a cough.  So we made a couple more trips to the pediatrician and one trip up to CHOP for his monthly transplant clinic a few weeks ago.

The trip to CHOP went ok, but his lab work was a little all over the place.  His creatinine was up, his white blood cell count down, and some of his other electrolytes were also out of whack.  But everyone thought it might have been attributed to the virus he was getting over and being a little dehydrated since he was having trouble keeping his tube feeds down.  So, they didn't make any changes to his medications, but asked me to take him for some re-peat bloodwork at home.  It took me a  little longer to get him to the lab because he was still fighting some kind of bug and I wanted to make sure he was super hydrated when I took him for labs.  So we finally just did that this past Friday and we'll hopefully get those results on Monday.  I'm really hoping we get good numbers this time, because I fear if we don't, CHOP will ask us to bring him to the hospital for a "tweak" with an overnight stay.  And I'm avoiding that like the plague!!!

But in all honestly, we have been dealing with some behavioral stuff lately.  Most of it, I'd say 90% of it, falls within the typical "terrible 3's" category; but some of it does not.  After talking with Stephen's pediatrician, we're pretty sure he's got a bit of post traumatic stress disorder (PTSD) stemming from all of the hospitalizations, procedures, surgeries and doctor visits he's endured.  It now rears its ugly head when we go into a doctor's office or hospital, or for example this past week when I took him for his yearly bone-age study (hand/wrist X-ray).  He panicked when I parked the car and when we walked into the office, but then calmed down while in the waiting room (thank you to Apple for inventing the iPad…it's a serious God send!).  But freaked out when the x-ray technician came out to get us and he was dressed in scrubs.  However, when we walked into the X-ray room and he saw the machine and the table….it was all over.  I'm talking throwing punches, screaming, wailing, and just losing it.  And he was fully aware that all it was was a picture of his hand…we even practiced slamming his hand down on the table like a hand print.  But it didn't matter.  He felt threatened and that was it.  He's always had some form of this and always while hospitalized, but it's gotten exponentially worse over the past 1-2 months.  And the same feeling he's having when it comes to medical-related things, is spilling over into normal life.  Right now it's the bath tub, whereas just a few weeks ago, the bathtub was fun.  Now, it's threatening and scary.  Any time he feels threatened or scared or unsure, the panic and anxiety takes over.  I know this isn't unusual for kids who have been through a lot medically, but we don't want him to feel scared in situations where there isn't anything to be scared of and we certainly don't want to do anything to make it worse.  And hopefully by working through this now, it will help to make the transition to school easier down the road.  So, I'm working with his doctors and the medical staff to come up with some sort of plan/resources for us.

So…that's what we've been up to!! :)  Oh that, and trying to buy a house.  We've finally, after months and months of looking and debating, have decided to purchase the home we've been renting for the past year.  It’s nice to have finally made a decision and to start putting roots down and making our home really our own.  We close at the end of next month and then our weekends will be filled with knocking out those home improvement projects!! Fun fun!!

Goofing around at the Famous 4th Street Deli in Philly.
Working on wearing big boy undies.  It's VERY slow going.  Stephen will love me for this one when he's 16!! :)

Breakfast of champions!!

Best part of the day is when Daddy comes home and Stephen get's to pull his car into the driveway.

Stephen was sampling cupcakes last night after we got home from dinner.  Thank you Cheryl and Kathy for a wonderful evening and for the delicious treats!!  Mabel was clearly DYING to get her paws on them!!