JT woke up heaving hard and followed that with episodes two and three shortly thereafter.  So after rounds I had to come back into the room, turn off his show, hold his hand and tell him that we were going down to radiology to get a new yellow nose friend.  I told him how brave he’d been, that he’d done everything I’d asked him to do, that this wasn’t his fault.  I said that it would help his belly feel better and allow us to go home sooner.  He took it quietly, sad but not crying or whining.  It’s impossible to say how proud I am of him.

Since he’s been so sick with vomiting, they inserted an NJ tube which bypasses the stomach and goes right into the rest of the gut.  Now he’ll be able to get his oral meds without missing doses and the nutrition will be far better and safer than TPN.  They’ve started with a very low volume to make sure he’ll tolerate it well.  If this works, they’ll continue adding volume every 8 hours and drop the TPN tomorrow night.  There’s no doubt that it’s the best thing for him at this stage.  It feels like a setback, but is very, very minor compared to what some of the other kids up here on the floor are facing. 

Since the procedure, JT has been very reserved.  It takes some time to get used to the tube and he did a bit of gagging around it initially.  We usually keep up a running dialogue most of the day but he hasn’t said much.  It was a traumatic afternoon and he also missed his 2 ½ hour nap so maybe he’s just tired.  But tonight his heart rate started going up and so did his temperature.  Please pray that his temperature does not go above 38 degrees Celsius…that would put us right back where we started two weeks ago with a couple extra problems to carry as well.

No answers to the calcium trouble.  His steroid function came back normal so it’s not adrenal insufficiency.  Dr. Davies, the new attending BMT doctor, was far less alarmist than yesterday’s Endocrinologist.  She said it’s probably something related to his Ectodermal Dysplasia that we’ll never figure out and will resolve on its own.  Please pray that she’s right.

Tomorrow is another big day.  We need for JT to tolerate his feeds and be completely fever-free.  We also need the calcium numbers to stay down on their own.  If all of that happens, we may possibly be discharged on Wednesday to care for him back at the apartment and they’ll follow him on an outpatient basis.  However, if he spikes a fever tonight, we’ll be back at square one.

We’re both tired.  Please pray for strength and perseverance for JT, that he may continue to run his race well.  Take your pick of other things to pray for, and thank you.  Good night.