Hi Everyone.  This update comes from inpatient room #9 in Cincinnati. 

JT and I came for his normal photopheresis treatment on Tuesday morning.  When we arrived at 10:00am a hoxworth nurse was not available to access JT with the photopheresis needle.  They needed to draw a CBC and a type and screen for a blood transfusion so another nurse accessed him with a regular needle.  Ended up he didn’t need blood anyway.  The hoxworth nurse could come at 2:30pm to do his photo treatment so they had to de-access him, put on the numbing cream and then reaccess him with the photo needle.  Well just before access, JT threw up all of his feeds.  The doctors were told, but they really don’t think anything of one vomiting episode.  So we went ahead and accessed with the photo needle and started the procedure.  During the procedure, his heart rate went way up – up to 190 at one point and he just wasn’t acting like himself.  They decided to end the photo treatment early and just in time as he started V & D big time shortly after.  They considered still sending us back to the hotel, but drew another CBC, took a blood culture and sent a stool sample for testing just to be safe.  Sure enough, his CBC came back with an elevated white count and neutrophil count.  This news along with that JT really was feeling crappy, earned us an overnight hospital stay. 

When we got transferred to the inpatient BMT floor JT still was accessed with his photopheresis needle (this needle sticks straight out of his chest about 2-3 inches.)  This is a short term access needle, so they had to de-access him again and re-access him a third time.  He was so good about it all and even cute too.  When the nurse told him he was going to have to be re-accessed a third time he said, “That’s it.  I quit.  I quit this hospital.”  He was completely serious, but it made the nurse and I chuckle.  Of course, he got the promise of a surprise from me for being so brave for three accesses in one day.  Then when I was talking with the hospitalist he mentioned he thought we’d be inpatient for at least a couple of days.  Little big ears doesn’t miss a trick, even when he doesn’t feel well.  He shouted at the doctor, “What!  We’re leaving for the beach on Friday!”   Finally at 10:30pm we were set for bed, only to have more D & V and another bed change.  It was a fitful night all in all, but things looked much brighter in the morning.  JT woke up much more himself and wanted to joke and play. 

Dr. Filipovich stopped by for an informal visit.  She was pleased to see he looked so much better, but wondered about a possible bacteria infection based on the elevated heart rate and increased white cell count.  At this point I pretty much thought Hilton Head was going to be out, but still was hoping for the best.  She told me she thought it was still possible if this turned out to be viral, but if it was bacterial then we’d be in the hospital for 7-10 days.  Now it was just a waiting game, hoping to not get that call from the lab saying bacteria grew out in his blood culture.  The doctors advised me to start back his feeds (I hadn’t given him any feeds since 10am the day before.)  I gave him only half his regular volume, but he tolerated those without V or D.  Yeah! 

JT was supposed to have another photopheresis treatment on Wednesday, but we thought for sure it would be cancelled.  Well, after he woke up feeling so good and his labs looked normal the docs decided he should get his treatment.  I was all well and good with this, but hated that it meant two more de-accessed and two more re-accesses for JT.  When I told him, he moaned about it at first but after I explained it all to him he understood he had to do what he had to do.  He has an amazing handle on this somewhat difficult concept.  I noticed so much during this hospital stay how much he is growing up and maturing.  He wants to know everything and the reasons behind it and then he’s ok with things.  I’m so very proud of him.  Photo went well, but wasn’t finished until around 7:30pm and then he got re-accessed around 9:30pm.  His port is pretty sore from all the activity and is bleeding a lot.  For this last access the numbing cream didn’t work so great because of all the blood that was mixed with it.  I was so glad to tell him this was the last access he would need during this stay.  He said, “Good, I think my port needs a little break to heal.”    So there had been no V & D during the day, but when we were trying to go to sleep he was moaning and a little restless.  Sure enough another big episode of V and D, another bed change and a call to housekeeping to clean the floor.  He fell into a deep sleep after that.  Otherwise we had a decent day, his CBC labs looked great and no news of bacteria growing in his culture.  Still a chance.

Thursday morning JT woke up feeling ok.  He’s still having D this morning, but I imagine he’ll be having that for some time until his gut heals.  The doc came in early and I told her the news about the D&V over the night.  She didn’t seem to think it was a huge deal.  So we started talking about how to make sure he wouldn’t dehydrate if we went home today.  As soon as JT heard that he started begging non-stop to be released.  We really like Dr. Jodell.  We put together a feeding plan and she decided to give him an extra fluid bolus this morning, but gave us the green light to hit the road.  So as I type JT is receiving the last 200mls of his bolus and we anticipate to be heading home by noon.

I’m a little nervous about our trip to Hilton Head, but also it seems all that more sweet after thinking for two days we wouldn’t be able to go.  JT is certainly not 100% and we’ll need to be vigilant that he doesn’t dehydrate.  But then again, I think the sheer joy and pleasure that being at the beach with our family brings to the boys and us may be just the right medicine to help him get back on his feet.   Thanks for checking in and for your continued prayers.