Saturday, April 4, 2009

Answered prayers: Ryan is tolerating his feeds much better--up to 4mL/hr.  10-11mL/hr would be full feeds for him (at his current weight), so we are headed in the right direction, but full feeds could take months or years to achieve.  But, if he can get 50% of his calories via his gut, then his jaundice should improve.  So, we continue to pray for him to tolerate his feeds well.  

Otherwise, Ryan seems happy and content.  Nora seems angry and hungry--poor baby.  she will start eating again tomorrow or Monday.  She is now also off caffeine, so hopefully she'll do OK off of it.

We did have that meeting with the Intestinal Rehabilitation Clinic (formerly known as the Intestinal Failure Clinic--I prefer the new name)--an intensive, multidisciplinary clinic and the whole staff was there--a pharmacist, a pediatric surgeon, a pediatric gastroenterologist, a dietician, a social worker, a nurse. They wanted to meet with us to introduce their clinic and discuss expectations.  Basically, after Ryan's next surgery (to reattach his remaining small intestine with his remaining large intestine--this happens in about 6 weeks), once he stabilizes  we will spend 2 days in the hospital with him to be the primary caregivers--manage his IV nutrition and his feeding tube--make sure we can do it.  Then he will come home.  He will have pumps that we have to manage at home as well as home nursing visits and weekly clinic visits to check his weight.  Beyond that, there are too many variables--Ryan may (hopefully) get to a point where he can get all his calories via his gut or he may not-- depending on how he does, we may have more things to consider, but we are not going to be spending time thinking about that at this point.

1 comment:

  1. hooray for answered prayers. blessings and continued prayers for your beautiful family.