Wednesday update:

Kate reports that Noah had a very rough night last night.  His blood pressure and blood sugars dropped and stayed low for no known reason.  To combat these, the doctors stopped all of his pain medications.  He also required D50.  Noah has been switched to 24 hour TPN to try to keep his sugars in the normal range. This makes his double lumen broviac, I mean 2 headed sea serpent line, even more important. 

Noah has been in tremendous pain all day.  Kate reports he has been withdrawn today.  He is very shaky and hurts even when someone touches him.  The doctors have restarted some of his pain medications but not all of them.  The pharmacy is not allowing the IV ibuprofen from home to be used, so that med is being changed to toradol.  The doctors are giving one of the pain meds but timing the morphine so that Noah receives it when he is in pain is still a problem.  Hopefully by tomorrow all disciplines will have worked out the difficulties inherent in controlling Noah's pain.

Earlier today, blood was coming from Noah's gut into his feral bag.  He has been started on IV protonix to help that.  When I talked to Kate tonight, Noah's feral bag wasn't draining at all.  They suspect a blood clot has occluded the line.  Kate was waiting for them to come flush and work on this before bedtime tonight.

Noah's suprapubic catheter isn't draining either.  They are uncertain whether it has been occluded or if his kidneys have quit making urine (obviously the worse of the two).  Kate was waiting for the medical staff to work on this tonight too.  Needless to say, working on these two tubes will be uncomfortable/painful for Noah, so pray for his pain relief.

Kate spoke to Noah's urologist briefly.  When she asked what could be done to prevent another urinary tract infection like this last one, the urologist hugged her and said that it would happen again.  He is sure the catheter is colonized with that resistant bacteria.  Bladder washes with antibiotics like gentamycin or even vinegar will be required to try and keep the bacterial counts low.   He had hoped Noah would have several months before his first infection. 

Noah has not yet been transfused.  They have told Noah that he won't be receiving his "courage beads" because this isn't a heme/onc admission.  Kate says it really  bothers Noah when he doesn't get the beads.  He can't understand why sometime he is rewarded for enduring hurtful events and not at other times for the same events.  Kate is keeping a chart of all the ones he would have earned and promised to give him the beads that she has acquired for him if the hospital system won't.

Kate is exhausted.  She does have her laptop but isn't ready to blog yet.  Her overall assessment is that Noah is worse now than at any time since the emergency.  Emotionally, this has taken a toll on her as she was expecting to be in Greenville for a day at the most and be able to go home with Noah at his pre-emergency baseline.  Noah is nowhere near that.  Kate and Jeff are concerned most about taking him home with the possibility of his blood pressure and blood sugars dropping unrecognized. 

Thank you for praying.

M