Tuesday, December 30, 2008
We've started experimenting with taking Mikan off the ventilator for 15 minutes at a time. He has been tolerating it wonderfully! If feels weird and wonderful at the same time to be able to carry my child more than three paces without having to worry about getting tangled in white and blue tubing. We do have to carry his oximeter around with us, but I will gladly do that. We haven't used any 02 off the vent either, he has been doing it all on his own!
On the downside, Mikan woke up this morning with an extremely irritated g-tube stoma. It was raw and bleeding and it has been causing him a lot of pain all day (hence the crabiness in his "off the vent video") After calling several doctors today, he was referred to a stoma specialist; however, no one will be in their office till friday, so we have to wait it out. Right now Mikan is surviving on Tylenol, and we are just trying to watch it and hope it improves. It's a mess. Does anyone have any ideas of things to try as an intermediate step?
Feedings have been going a little better. We are avoiding the bottle completely and just going back to the spoon. He takes several bites, just at his own pace. We tried telling him that if he took all his food by mouth, we wouldn't have to mess with the g-tube, and then he wouldn't be in pain as often. So far he hasn't really listened. But we've learned by now that it's Mikan's pace, not ours.
Posted by John and Jenna Gensic at 3:55 PM