Great news…after JT’s photopheresis treatment this afternoon, we are homeward bound.  It’s been a pleasantly uneventful few days – some card games, some TV, some tossing the football around the hospital room, lots of talking.  He’s been so great – brave and cheerful to the end of this long stay.  Our night nurses have been good so though we’ve stayed up late, we’ve slept well, and that makes a big difference in terms of how things go during the day.

As for his left arm – he’s moving it around well, lacking only 10 degrees of motion, and the Occupational Therapist believes he will regain this as well with time.  The biopsy site is healing more slowly and we change his dressing twice a day but the healing is steady.

 He’s going to need IV antibiotics around the clock for the next couple weeks &a ...

Hi.  JT continues to do well.  His stool culture came back negative for Rotovirus and C-Diff. Yeah!  Tomorrow the final culture should be back and if it's negative too, then JT will be back out of isolation, which means he can go to the playroom.  He has been shut off this weekend, but did have a fun suprise today when the Occupational Therapist came and said he could still go to the gym while in isolation.  They just had to wipe all the equipment down before JT's therapy and then afterwards as well.  It was good for him to get out of the room and walk a little bit to the gym and then once he got in there he just went crazy - getting all sorts of energy out.  He had the O.T. cracking up.  He did a great job using his arm.  We actually had taken the ace bandage off before therapy to encourage him to use it more.  From an infection standpoint, we still put antibiotic cream on this biopsy site and cover it with a b ...

Hi Everyone.  JT is doing well.  He's fast asleep now (8:20pm) and I'm hoping he quickly adjusts back to this type of sleep schedule as morning Kindergarten will be starting for him in just a few weeks. 

So, the Orthopedic Surgery resident took off the dressing this morning.  The incisions look great - very little swelling and no blood or seeping.  The place though where the Dermatology team took the biopsy was a little red and seepy.  The doc looked at it and recommended we put bacitracin on it twice a day.  The docs have also removed two of the big gun antibiotics that JT was on, leaving him on just Ancef three times a day by IV.  They think they'll leave him on this IV antibiotic for at least 4 weeks.  The home care team will come and teach me about how to administer it at home.  I'll most likely just leave him accessed as he'll need this antibiotic three times a day.  Luckily it ...

Hi Everyone-Jodi here now.  JT’s surgery went really well today.  It was so awesome – there was an opening in the OR at 9:00am today so JT got to get his arm all sewn up by 10:30am.  The Orthopedic Surgeon said the swelling was gone, the lines were clear and straight and he was able to close JT’s arm up without needing the plastic surgery team.  Dr. Wall told Brian that he felt confident JT would get back the full use of his arm, a rare thing where necrotizing fasciitis has been.  He placed several sutures on the outside of his arm but chose not to use any inside as they can be sites for infection.  They plan to take the bandage of ...

Surgery came at 5:30 am this morning to change JT's dressing and it hurt him a little even though the nurse gave him morphine a at 5:00 to get him ready.  Again, JT and I chose not to look.  I am haunted by the glimpse I had of his arm on Sunday, completely opened up as if with a fillet knife.  He is the toughest, bravest person I've ever met - no tears, just some wincing as they peeled off all of the soiled bloody gauze and packed new wads of new gauze around the wound sites before re-wrapping.  If it were me, I wouldn't be able to get my mind off of it, but he just goes about his business, playing UNO and watching TV and building Legos and cracking jokes.

He's scheduled for add-on surgery to close up the wounds tomorrow.  There was some discussion this morning as to whether or not his arm had been given enough time to drain - some doctors thought it was early to close things up.  However, like everything else, it's a balance ...

Brian here from Cincinnati.  The last 24 hours have been critical ones, more critical that I realized in the midst of last night / early morning, and maybe that was for the best. Only now am I beginning to realize the nature of last night's crisis.   We hope that the worst is over now, but JT still has a long way to go before he's out of the woods; the emergency surgery last night was drastic and terrible in its own right.  His little body has so much healing to do.

As Jodi related, his left arm contined to swell as he continued to lose mobility.  Nobody wanted to pull the trigger on the surgery unnecessarily but things moved quickly and decisively once there was talk of potentially losing the arm.  I was stunned.  Thank God they acted when they did.

The doctors have unwrapped the arm twice today.  It was truly gruesome, the worst thing I've seen (visually) in the history of his complex medical jour ...

Hi Everyone.  Sorry for the delay in an update.  I hesitated to write anything because most all the news was hurry up and wait and lots of speculating. 

When JT and Brian arrived in cincy Dr. Filipovich met them at the ER.&nb ...

Hi Everyone...Just a quick update.  JT and I arrived home last night around 8:30pm from Cincinnati.  Later that evening as Brian was putting JT to bed he noticed a little black round spot on his arm near his elbow that was also pretty red around it.  I hadn't seen it at the hospital and neither had the nurse practitioner who thoroughly checks JT over each visit.  Brian asked JT if it hurt and he said, "only when you touch it."  Brian and I both felt concerned but figured we'd wait until tomorrow and e-mail our docs some pictures.

The next morning (which is today) JT had another little black spot on his other arm that was hurting him.  I took pictures of both sites and e-mailed them to our docs in Cincy and our dermatologist in Pittsburgh.  Not long after our nurse practitioner e-mailed back that she would call in a prescription, but also show Dr. Filipovich the pictures.  A few hours later Gr ...

Hi Everyone-

JT and I are currently in Cincinnati.  JT is just finishing up his second day's photopheresis treatment.  He continues to do well.  In fact today a reporter from the University Medical Center came to take pictures and write a story on the success of JT's photopheresis experience.   JT is down to just two oral medications, one IV medication, one subcutaneous IGG infusion and the photopheresis therapy every two weeks.  We are hoping that sometime in the fall the Hoxworth Blood Center will receive the new photopheresis machine, which again, will be more efficient than the old one.  Once this arrives and is ready to use, we are hoping to push photopheresis back to every three weeks.  Yeah!

It's hard to believe that we're heading into the home stretch of summer.  We've so much enjoyed the pool down the street, riding bikes and going to the parks.  We're also lookin ...

Hi Everyone.  Sorry again for the lapse of time since the last update.  Everything is good here.  In fact, wonderful.  We've been having a blast this summer riding bikes, attending picnics and parties and swimming at the CC pool down the street.  I can't hardly believe it but JT just finished his 6 week long summer school program to help him prepare for entering Kindergarten in the Fall.  He did absolutely GREAT making new friends, following directions and learning the ropes of what will be expected of a Kindergartener.  We couldn't be more proud of him.

The last few visits to Cincinnati have been uneventful but good.  Two weeks ago the docs had JT's immune studies drawn and yesterday I found out that the results look super.  Today we will meet with Dr. Filipovich to get her take on it all, but they did already discontinue two of his daily oral meds. Yeah!    He is still on ...