Thursday night Update:

Overall, there has been little change today.  Noah's blood pressure has remained low, he is still in pain and  Kate has not been able to rest.  Below are the details....

1.  Noah remains on 24 hour TPN.  His sugars are still low, however.   Noah is tired of having his fingers stuck.  As his fingers are black and blue, they are now using his toes to draw blood to check his blood sugars.  Usually Noah sleeps through the toe sticks, but he always checks his fingers and toes when he wakes up.  He is so smart!!

2.  Blood is still coming from his G-tube.  Some of it is fresh blood.  He will remain on IV protonix hoping the bleeding will stop without further intervention being needed.

3.  Praise!!  Noah's kidneys are working. 

4.  Noah's suprapubic catheter is probably colonized with the bacteria that caused the infection, and still doesn't always drain well. Noah's urologist has decided to take him to the OR at some point tomorrow to replace the catheter.  There is a risk of complications during the surgery, so please pray all goes smoothly.

5.  Noah's hemoglobin is below his previously set transfusion limit.  No transfusion yet. 

6.  Pain is still a huge problem for Noah.  An adult pain management specialist has been consulted to determine a workable plan for managing Noah's pain at home and  in the hospital, thus providing a seamless transition and pain control for Noah.  Please pray for this physician as in medicine "children are not little adults."  Kate is very hopeful that a concrete plan can be formulated and in place for the next time Noah is admitted.  It can be hard for people to understand that Noah withdraws and is quiet even when he is in severe pain.  Noah rarely asks for pain meds now because he doesn't like the sedation side effect (getting benadryl with the morphine here instead of other meds which don't make him sleepy).  Kate hopes the doctor doesn't suggest withdrawing all pain meds and starting from scratch since the regimen from W-S worked so well with so few side effects.

7.   Please pray for Noah's blood pressure to stabilize to at least a systolic of 80.  This is Kate's biggest prayer request at this time.   This low bp could be due to worsening in Noah's autonomic nervous system.   Noah's cardiologist has previously suggested this as a possibility.  

8.  Noah's neurologist said he would be seeing Noah tomorrow.  Noah's neuropathic pain has worsened lately and he has developed an unusual blinking behavior. 

9.  Noah's infectious disease specialist is also seeing Noah tomorrow.  She has ordered some labs to check Noah's immune system.   She is also developing a plan for preventing further bladder infections. 

10.  Noah's urology medication patch has been tripled in dosage.  This is causing a flushing side effect. 

Please pray for wisdom for Noah's many doctors and nurses.  Pray for excellent communication between them.  Pray for Kate to advocate calmly and well for Noah despite her exhaustion and worry. 

 So many things need to be accomplished for Noah.    Please pray for sleep for Kate and Noah.  Last night, Noah's nurse found a more comfortable bed for Noah's room.  That is a praise too!!  Noah is still sweet to his nurses, thanking them each time they leave his room.  Kate would love to be home for Thanksgiving.  She is looking forward to her mother's and daughter's visit tomorrow. 

Also, pray for Jeff who is busy being Mr. Mom.  Noah's brothers and sisters miss their mom and Noah too. 

Thanks for all your care, concern, and prayers.

M