Monday started out as an exciting day. They took Timmy downstairs to a special room with a video x-ray machine. They put him in a really uncomfortable position under the machine, filled a bottle with some icky barium, and gave him his first bottle. (Barium is a special kind of dye that shows up under an x-ray machine.) Well, Timmy was so happy to finally be allowed to drink as much as he wanted from a bottle, that he just gulped down 25 ml. Bad idea. What goes down must come up, right? He puked it all over the fancy x-ray machine. The good news is that Timmy was interested in eating and that the video x-ray showed that Timmy knew how to swallow well. The bad news is that after Timmy puked, some of the barium ended up in his lungs. The even worse news is that the x-ray machine forgot to write the video to a DVD, so nobody could review the actual video of him swallowing. So we do not really know when the barium went into Timmy’s lungs, but we think it happened when he threw up. So all that means is that Timmy is not allowed to drink as much as he wants. Instead he gets to drink one bottle of 15ml of milk once every day. And he is supposed to practice learning to pace himself. Because gobbling up all the milk at once is a really bad idea. He has been doing a very good job, but once in awhile a little bit of milk goes into his lungs, which is not good, so it will probably be a long time before the doctors let Timmy drink as much as he wants.
One of the nice nurse ladies has been telling me about something called reflux. Lots of babies reflux, and usually it is not a big deal. But the problem with Timmy is that because of his big surgery, stomach acid could cause problems with his surgery site. Plus, if Timmy aspirates (meaning milk goes into his lungs) when he refluxes, that could cause pneumonia. So that means we have to try to keep Timmy from refluxing very much. (Timmy is also taking special medicine to make his stomach acid less acidic.) If Timmy starts refluxing a lot, he will need a big surgery called a Nissen fundoplication where they will wrap part of Timmy’s stomach around itself so that he cannot reflux.We are hoping that that does not happen!
The doctors have been trying to increase the rate of Timmy’s milk going through his feeding tube. For awhile he was getting 22ml/hr all the time. Then he started getting 33ml/hr for two hours, with one hour getting no food. (That was when Timmy started learning what hunger was—he does not like to be hungry!) After that he got 66ml/hr for one hour, and then no food for two hours. But when the doctors changed his food to 66ml in half an hour, Timmy started throwing up a lot. We decided that his little belly is too small to fit that much food in at one time. So now Timmy eats 66ml of milk over one hour. He is much happier like that. But eventually we want to increase it so that he can take his food all at once so that he eats more like a normal baby (even if he eats through his stomach).
Timmy had another really nasty encounter with fluids. If you remember, Timmy had a G-tube going into his stomach and a J-tube going into his intestines. The doctors told Timmy’s mommy and daddy that Timmy could not go home while he still had the J-tube. So on Thursday the big day came to pull out the J-tube. We were all very excited. One of the big important doctors came to Timmy’s bed and reached down and pulled out his tube! (It was very weird to see him do this, because until now I have been trying very hard to keep from getting my moose antlers caught on his tube, because I did not want to accidentally pull it out.) The bad thing that happened when the doctor pulled out the tube is that stomach acid started gushing out the hole. And it burned Timmy’s belly and made him cry harder than any of us have ever seen him cry. (Even though Timmy cannot make noise like most babies, he can still cry!) So the doctors decided that Timmy cannot eat until the hole heals. (He will get all of his food through an IV.) Thursday, Friday, and Saturday were very hard days for Timmy’s mommy and daddy and me. We did not like to see Timmy cry so much. The nice nurse lady gave Timmy morphine to help make him feel better, and Timmy’s mommy dipped his pacifier into some sugar water to get him through the times when he could not have morphine. Finally on Sunday Timmy started to feel better again.In other news, Timmy went through a big growth spurt this week and now he is huge! He is very long and weighs 9lbs!