Monday, May 25, 2009

From Daddy: 

Update on Ryan: He is up to 10ml/hr feeds today with plans to go up to 11ml/hour tomorrow and then I think they are going to progress a little more slowly. His overall goal is 22ml/hour (to be off TPN totally), but as he gains weight, that goal will go up--so it is a little bit like chasing your tail. 

His incision and g-tube sites look really good and he seems to be healing nicely. It is a little harder to hold him on his belly with the g-tube there I am realizing. Diane, one of his primary nurses helped me figure this problem out. She also also asked to have his Sat. probe (measures his oxygen level) taken off for good and every line that goes makes it easier to hold him. So now, other than his heart rate/respiratory rate monitor, the rest of the lines are coming home with him (if he stays on TPN that is).

Speaking of which, Friday I am going to be be trained on how to maintain Ryan's g-tube and Broviac. The prospects of having TPN at home long-term is daunting to say the least. One source that I read said that patients with long-term central lines average one infection per year. Jessica already went through the training and we are figuring out how we will rearrange our house to accommodate the needs of home TPN.

Ryan's Bilirubin is down to 4.0 and he looks the best he has in months in terms of any jaundice. In all fairness to the Intestinal Rehab people at the U, their method of "lipid restriction" for Short Gut kids seems to be working (as opposed to alternative lipid emulsions like Omegaven).

He is gaining weight, up to 6 pounds 12 oz. and staying steady in the 10th percentile for preemies. 

He loves his vanilla flavored Elecare. They only allow him one oral feed every 3 hours, and he only gets the amount he would get via his g-tube for one hour (10ml right now). They call that P.O. which in Ryan's case, stands for "pissed off," because he desperately wants to eat much more. It literally takes him 10 seconds to eat his bottle. They tried giving it to him with the "slower" nipple and it took him 15 seconds. 

In contrast, Nora will eat 100ml/feed every three hours.  She is doing great and we are now able to phase in breast-feeding every other feed.  She is also 6 pounds 12 ounces (well was, as of 4 days ago)--she gained 18 ounces in 14 days which is great as they want her to gain 1/2-1 ounce per day, so she is well above that.

1 comment:

  1. So, Ryan's appetite is just like his daddy's?! I remember Ryan's daddy and my kids' daddy eating everything in sight when they were at the U of M...and usually it was right out of whatever container it came in!! :) Ryan is in good company with his appetite!

    Continued prayers about Nora's eyes? Any exams coming up?

    Hugs, love and fervent prayers from the McHughs in Virginia.