Friday night update:

First a correction:  any of you who read the blog really early this am may have seen this line "Kate says they are just steps away from the ICU".  The quote was correct, but my interpretation was incorrect.  Kate removed the line this am.  The interpretation should have been that Noah's room is geographically steps away from the ICU NOT that Noah was medically steps from the ICU. 

Now for today.  Noah's surgery went well.  The new suprapubic catheter is working well but Noah is disappointed with its blue color.  He is enjoying the "goody bag" from recovery.

The adult pain specialist declined to see Noah because he is not a pediatric pain specialist.  Noah may be able to get an outpatient palliative care consult with a pediatric specialist in Columbia. 

The ID specialist did see Noah.   Since Noah is now officially allergic to vancomycin, they will probably be initiating vinegar bladder washes to keep the bacterial counts low.   She is also coordinating a meeting of Noah's specialists in a few weeks to establish a plan for pain control when Noah comes into the hospital.  It will probably involve anesthesiologists and a few hours in PICU, but Kate is happy that the doctors will be communicating about the isssue.

Praise!!! Noah's blood pressure is now staying above 80 systolic.  Thank you God for intervening!

The doctors have ordered blood counts for tomorrow morning to assess if Noah still needs a transfusion.

Noah had another episode of vomiting bile today.  Kate asks that we pray the doctors can figure out what is causing this problem before Noah goes home.  If this happens once he is home they will have no choice but to assume he has developed a blockage in his intestines and then they will have to go back to the hospital.  All of his GI tubes were working when the vomiting began.

Noah's daily fluid totals have been decreased and he is experiencing thirst  and having headaches.    The neurologist was unable to visit Noah today so there is no input re:  headaches yet. 

Pain is still an issue for Noah.  He woke up last night crying in pain.  Kate asks that we pray for communication between Noah's inpatient and outpatient doctors so that his pain control plan is prepared and in place when he leaves for home.  She would really like to see Noah back on the regimen using fentanyl that W-S used because it gave Noah freedom from pain and a great ability to enjoy his playtime. 

Kate is still very tired, but feels more optimistic tonight.  She feels like much was accomplished for Noah's care today and the doctors are communicating to arrange things for the future.  She is hopeful Noah and she will be home for Thanksgiving.

M