Jacob and I drove to Cincinnati yesterday for his photo treatments and infusions.  We arrived around 12:30pm, but were not able to start the photopheresis treatment until 5:45pm.  When we first get to the hospital Jacob gets his port accessed and then they draw a CBC to check his hematocrit level (the number of baby red blood cells).  This takes about an hour or so.  As has been happening the last several trips to Cincy, his level did not come back high enough, so he had to get a blood transfusion first.  This process takes several hours.  I thought we were going to run out of time for the photo treatment because the day hospital closes at 8:00pm, but they held it open for us until 9pm so Jacob could get his treatment.  Our Hoxworth nurse and I joked about just staying the night in the room as we would be starting the treatment again at 7:30am.  I was happy to get the treatment in though because the last 2 trips to Cincy Jacob has only received one photo treatment per week instead of two.

Dr. Filipovich came to see Jacob yesterday too.  I had a list of questions ready for her and I’m afraid we don’t have many answers yet.  I think I explained in my last blog how we were able to change the protocol for when Jacob gets a fever – how it doesn’t automatically mean he has to be life flighted to Cincy or admitted to the hospital for 2-3 days, thus sparing him unnecessary hospital stays.  Little did we know how quickly we would be implementing this new protocol.  Two weeks ago when Dr. Filipovich, Brian and me talked about this, Jacob got a fever that night when we returned home from Cincy.  He was checked out at the Grove City ER, a CBC, vitals, blood culture, given a dose of antibiotics and was able to go back home.  One week later Jacob got another fever and we went through the same process again.  Thankfully, able to return home.  Yet, this leaves us wondering why he is getting fevers so frequently (I think he’s had 5 or 6 in the last few months.)  Dr. Filipovich doesn’t know why either.  They drew a bunch of labs to see if they could see anything that would suggest an underlying infection.  They also drew another blood culture, did a urine culture and a kidney ultrasound.  The fevers also could just be from JT being around Justy and all the germs those two pass to each other.  We’ll see what they find out.

I also asked Dr. F. about JT and Justy returning to preschool.  I told Dr. F. that I’d be willing to stay at preschool the whole time and wash their hands a lot.  She did say this would be effective, but that we would first have to wait and see what his immune studies look like.  They drew over 40 cc’s of blood to check his immune functioning.  We should know some results by next week.  They both miss preschool so much.

Dr. Filipovich didn’t make any changes in the steroids this week.  She wants to sit tight for a little bit and make sure everything is looking good.  I asked her if it was likely that the chronic GVHD would come back as they say it takes years for it to “burn itself out.”  She responded, “that’s why we’re taking it so slow to decrease the meds and treatment.”  Her hope is that this will be our only round at fighting this.  Boy do I hope so too.

Thank you all so much for checking in on us.  We’ll be heading home in about an hour to be greeted by the massive amounts of snow at home.  We’re looking forward to going tubing this weekend.