Lost a little weight, but tolerating well so far.

Today I was able to visit Kade again for a long time. I  love those long visits.  He was pretty much awake for the whole visit. He would cat nap every so often, but for the most part, he was very alert.  Had a big mommy oops....When I was trying to move him to be more comfortable, his hand was on his tube and when I lifted him, it yanked the feeding tube from his nose.  Poor baby! :( Mark had to put it back in and surprisingly, he didn't really cry.  That goes to show you how tolerable he has become to all these people messing with him all the time.
This was the one of the first times he had no tube. I only remember one other time in the very beginning where he was without tube/tape for about an hour.

When they did the weekly TPN bloodwork on Monday, his liver levels were slightly elevated, but nothing to be alarmed about. They think he is starting to look a little yellow today. I didn't notice it so much, and I would be surprised...we are lowering TPN, so why would his liver start acting up now??  Also, his bag finally stayed pretty good today. The ostomy nurse is coming tomorrow morning to help get a plan together on that.  If he isn't put back together, then he keeps the bag, and that means it will keep having to be ripped on and off and hurting his poor skin more and more.

When I called tonight to see how his night was going since I left, Tiffany said he stayed up until 11, took his bottle and then went to sleep. He did weigh 8.15 tonight which is less than the past couple nights, but it does flucuate a bit.  I was concerned with possible "dumping" since they increased his feeds to 20ml/hr continuous, and 3 bottle feeds a day of 20ml, but she said he has only put on 48 total from 7am until now (12am) which is great. It is considered dumping when they put out 50ml per kilo and Kade is 4 kilos, so since he has only put out 48 total, that is good.


Oh, this is a video from the other day.... He found his hands and was being so cute. Problem is, when he found his thumb, his index finger found his feeding tube, so that makes it difficult to keep him from pulling it. He gave me a big smile!

Keep the thoughts and prayers coming!

xoxo
G


She also said that he was resting comfortably.