Crazy Thanksgiving

I just realized that for those of you who don't follow the Facebook page posts, you probably had no idea about all of the craziness the week after Thanksgiving.  I often times post on Facebook and Instagram first because it's so simple, and totally forgot to post here.  My apologies!!  So....Stephen ended up in the hospital at CHOP from Monday, 12/1 to Thursday, 12/4 with what amounted to program toxicity, norovirus, low sodium, and high potassium.  He's doing much better now that we're at home and was back to school this week, but we're still doing a lot of blood work here in Virginia and the doctors from CHOP are keeping close tabs on him since he's definitely not back to 100% yet.

The story is, about 4 weeks ago, Stephen picked up a stomach virus.  It started on a Thursday with a fever, vomitting and eventually diarrhea, but went away in about 48 hours.  He went back to school that next week (and gave me the stomach bug which resulted in an ER visit for IV fluids...thanks kiddo!!), but the day before Thanksgiving, started feeling sick again.  He had a low grade fever Wednesday evening and by Thanksgiving morning, he was sick as a dog; high fever, inconsolable, nausea, and diarrhea.  Of course, it was my first time at hosting Thanksgiving and had a house of family and friends (despite the craziness though we had such a lovely day)!  We decided not to take him to the ER because his fever would break with the tylenol and any time you walk into the ER with a kid like Stephen, it's an automatic admission and tons of tests.  Friday morning we took him to the pediatrician who again said it was just a stomach virus and sent us home.  Thankfully, we had an already scheduled routine transplant clinic visit at CHOP on Monday, so we held out through the weekend and Stephen thankfully improved.

Bill ended up sick Saturday night/Sunday morning, so I took Stephen up to Philadelphia Sunday  night and we had a "sleepover" at the Gift of Life House.  Even though his symptoms had improved, he still had some diarrhea, a cough, and was constantly complaining his tummy hurt.  Poor kiddo was definitely still fighting something.  Monday morning we reported to CHOP, had his blood work done and waited to see Dr. B.  I knew in my heart they were going to admit him, so I had packed enough clothes and stuff for a week, just in case.  And as suspected, his numbers were ALL OVER THE PLACE!!!

His creatinine is usually between 0.4 and 0.6; it was 1.3.  His prograf is usually around 5.2; it was over 12.  Really really bad.  So...they admitted him, Bill packed a bag and his parents took him to the train station and by 6pm, Bill was in Philly too.  The docs started Stephen on IV fluids and put him back on his high calorie formula and stopped his progaf and ran a battery of tests.  It turned out that he came back positive for norovirus; which is that nasty stomach virus.  So that meant we were on isolation and Stephen couldn't leave the room.  Trying to explain to a three year old why you can't go to the play room is excruciating!

Basically his body wasn't absorbing his immunosuppressant drugs correctly because he didn't have the proper nutrients he needed and so he was absorbing WAY TOO MUCH of his prograf.  That caused his creatinine to sky rocket and his kidney function to plummet.  I was keeping him really well hydrated with lots of water and pedialyte in his g-tube, but he needed the high calorie formula for not only the calories (he wasn't eating much) but the balanced nutrients (sodium and potassium).

Thankfully his creatinine bounced back fairly quickly, and his prograf has just come back to normal as of Thursday of this past week, but his potassium is still high, so that means he's no allowed to eat any potatoes....his favorite food.  Thankfully the excuse, "Dr. B said you're not allowed to eat french fries," has worked pretty good so far and we haven't had any big meltdowns yet.  And his appetite seems to be getting better.  But he still complains a lot that his tummy hurts and he's definitely a lot more tired that what he was before.  And he had a rough couple of days at school.  His teacher said he cried a lot and was pretty much staring at the door all day long, which of course breaks my heart.  I'm hoping as we get closer to Christmas, we'll have our happy-go-lucky Stephen back.

So, that's been the past couple of weeks!  And unfortunately, we're not the only ones who have been hit hard by illness.  Our good kidney friend, Parker from New Orleans, is battling some viruses now too in the hospital and plenty of other kiddos have been hit hard this winter so far.  We're keeping our fingers crossed this will be it for us this winter!!!  I will say though that Stephen was a total champ during this admission and only freaked out one time when they initially put in his IV.  Other than that, he did so awesome with all of the 5AM blood draws (they stick them every morning), pokes, prods, and slept really great in his "robot bed."  And for the first time, didn't freak out with the ultrasound!  He just simply asked the radiology tech, "Can I have the cold jelly?  I just don't like it hot."  He's my hero!!!