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 only takes 15 minutes to infuse so it shouldn't be a huge deal.

There was talk of releasing JT tomorrow, but we all decided on the cautious side to keep him in the hospital through Tuesday next week.  This way he'll be able to get his photopheresis therapy on Monday and Tuesday and the docs can keep a close eye on those incisions as well.  Yesterday I gave JT his subcutaneous IGG infusion and he received his steroid IV bolus today.  He was definitely bouncing off the walls.  It will be hard to contain him until Tuesday.  The did change his isolation status and he was able to go to the playroom tonight and take a little walk too.

He's still a little afraid to use his left arm and favors it quite a bit.  The Occupational Therapist came today to access him and thought he was doing well so far.  They will come tomorrow and Monday and Tuesday to work with him.  He likes the change of scenary.  Brian and I also decided that we will still switch out on Sunday even though he should be released on Tuesday after afternoon photopheresis.  JT will need to come back the following week Sunday night for an early Monday morning photopheresis appointment and Brian will be back to work already so it will be me coming.  Every little break you can get from the hospital helps.  Amazing JT never gets that luxury.  We switched JT's photo treatments to two weeks in a row so that he wouldn't miss his first two days of Kindergarten.

So everything is going along pretty well.  The only not so great thing is that JT has diaherea (sp?) and we're hoping he's doesn't have C-diff or VRE or something now.  Tomorrow they will send out a sample of his stool to find out.  Please pray it's negative and that we can get this boy home as early as next week.

Thanks for your continued love and support.