Elias had a good night last night. He was able to get some sleep and that is always great. We lost the IV again last night and were unable to get another started, so we had to hope that he tolerated the feedings. We now have him progressed up to 35mL per hour, his normal rate. He seems to be handling it well. We just returned from fluoroscopy where they placed an NJ feeding tube. Elias is pissed off about it too! He has never pulled it out before with his hands, but he has not had one in about 6 months. He is older, wiser and better with his hands. So what did he do as soon as we got back to the room…tried to pull the darn thing out. My bet is that it is not going to last the night. I am waiting for his nurse to get back from her lunch to help re-tape it a little more secure. While we were down there the surgery team wanted a look at the placement of the balloon to try to determine if the existing stoma goes into the stomach or the duodenum. After speaking again with the doctors I think I have an understanding of the concerns that exist and why this is taking forever to rectify. First off, there simply needs to be a new G-tube placed. There is no argument from anyone on that point. The problem really is the removal and closing of the current stoma and tube. They are not sure where the stoma path leads, into the stomach, but lower than normal or straight into the duodenum. The latter is the worst scenario requiring more planning and invasion during surgery. Assuming it is a straight path into the duodenum and misses the stomach completely, as they are theorizing then the stoma will close but the tissue around the duodenum will not and would essentially become an imperforation that if not closed properly could become peritonitis or another internal infection. The doctor in fluoroscopy could not give the definitive look or decision on where it is. The way it appears on the fluoroscope based on typical anatomy which is not clearly defined in this imagery it is in the stomach , but as we have been thinking all along much lower than it should be. If it is in the duodenum then Elias’ is not normal and much larger than it should be, which given the rest of unique anatomy that is very possible. So not too sure the surgeons are going to get the info they hoped to achieve from this, but we can hope it is enough.
Overnight they decided to put Elias on oxygen, a very small amount just to try and help enough to keep him off the vent. So far that is working somewhat and we think it will remain like this until Monday when they can make some decisions and have another look at the trachea and trach tube. The ENT made a comment last night while he was in scoping Elias that I neglected to mention. He said that it is very rare that a little guy has them all around a conference table scratching their heads. Sort of served as a reminder to us how complicated Elias truly is despite his positive gains, attitudes and improvements. He is making these doctors work hard and not making things easy in the diagnostic department. As usual though the staff is falling in love with him. He has been and always has been a trooper with a great spirit and lots of fight. This is a common characteristic of many of the children we have encountered with medical needs similar to Elias. We are grateful that he has this strong will and inspires us to be better parents than we were the day before. Elias has awakened from his nap so I must guard the tube. Hoping a little Wubbulous World of Dr. Seuss will keep him occupied and distracted from the discomfort of the tube in his nose. We will update when we have more information.