I feel much better about things after speaking to the GI nurse numerous times over the past few days!
Everyone is in agreement that Alex can not go very long without replacement fluids. They do not want him to be dehydrated or feel bad. However, they would like him to be deaccessed some. After watching him, his urine output and his labs closely this week, we feel like he may be able to have fluids replaced once every three days and hold his own. For the next little while we will still watch his numbers closely and speak to GI daily to sort through our new plan. If this plays out as it has we would access Alex's port twice a week just for one night and he will be deaccessed the rest of the time.
This sounds like a good plan so now we will just watch and wait to see if it will work!
School has been wonderful so far! Alex and I are really enjoying all the books and work we have been doing. He even asks to do more at times. I love watching him learn and be excited about learning.
Thanks for allowing me to have this place to vent and share our lives.