G-tube update

Luke did get his g-tube on the 21st like we expected. It almost didn't happen since surgery had left him off their list, but a terrific nurse got it sorted out right at the end of the day on the 20th. Luke also had his second orchiopexy in which brought down his right testicle. He still has to have one more surgery where they bring down the left testicle which will probably happen in February or March next year. This surgery seems to have been Luke's most difficult so far. He stayed in the hospital for 4 days and had a good bit of pain, transitioning to OTC pain medicine (Tylenol) only on the last day.

Getting Luke up to speed on his g-tube feedings has happened more slowly than we expected. His goal is 5 bolus feedings of 6 ozs. each over the course of the day. This puts the feedings at about every 3 to 3.5 hours. He is currently at 1 feeding of 6 ozs. and 4 of 5 ozs. and they aren't bolus yet, but given by a pump over 45 minutes to an hour. At first Luke was throwing up anything over 4 ozs. like his stomach was just too full. We put him back on Reglan to help speed up his digestion and the throwing up has gotten much less. Unfortunately he got a cold in the last week and some of his hard coughing is making him throw up, which happened a lot in the past with his bottle feeding. The good news is that Luke already seems to have gained a few ounces going from 17 lbs. 6 ozs., when he was admitted on the 21st, to 18lbs. 1 oz., yesterday, or from 7.9 to 8.19 kg (both with clothes on). So if his weight gain is good, the nutritionists aren't as worried about getting his feeding up to goal.

With the exception of what is lost through throwing up, Luke's feeding is finally really consistent. The pump is wonderful for that. It is so easy to use and taking Luke out while he is eating is a breeze. The pump has a little back pack and it just comes right along with us. Now Luke can eat in the car and the stroller and, the best part, even when he is asleep! Another benefit of the g-tube that we have noticed is that Luke is finally well hydrated and actually producing several wet diapers a day. And the strangest thing of all is that Luke's constantly draining ears have almost totally cleared up. His left ear (the one that was cleaned out) has nothing draining, and the right can only be seen when we clean out his ear with vinegar water each night. Now, so far, we aren't seeing a big difference with his hearing, but I would have to think that there is at least some improvement. Luke did make a new sound yesterday - a very brief buh, buh, buh. When he has another booth test next week, we'll see if they can tell a difference.

The other news is that Luke finally got into VitalStim. He starts next Monday, so I will keep you all updated about his progress there.