Well, we finally got our home oxygen set up and now we are all trying to get used to it. The oxygen concentrator which is the machine he will be hooked up to at home is pretty loud and it will take some getting used to since Noah sleeps in our room. We also got some portable oxygen tanks for when we are away from home for naps. So our room is looking and sounding more and more like a hospital!
Now getting the nasal prongs on Noah last night was quite the battle! I basically had to pin Noah down as he screamed. We are still experimenting with how to keep the prongs in his nose as he hates it and likes to yank it right out. Looks like we will have to go back to having tape on his face. Our home care nurse is coming today to help us figure out the best way to do this. Once he was sleeping, it didn't seem to bother him anymore and we had a good night last night. I only had to get up to suction him once and then he slept in this morning! That oxygen must be good stuff!! So today we will just have to work on getting him to wear it for his naps. I'm sure once he gets used to it, it won't be a big deal. When I weighed Noah today, he was up one ounce from yesterday (7lbs 5oz). It is probably premature, but I am really hoping the oxygen and better sleeping will improve his growth!
The other issue we are dealing with is that Noah's fundo is loosening and he is refluxing again. We started a new medication today called omeprazole (Losec Mups) in place of the ranitidine he was on before. So we will see if this makes a difference. If not, Noah will likely have a temporary gj-tube placed. This would replace his g-tube. A radiologist would thread a tube through his stoma into his jejunum (part of the intestines). This is not a surgical procedure, but would just be done in the xray room. So basically we would bypass his tummy for a while. This is a short term solution, maybe for a couple of months or so, and not tolerated well by everyone, so it would be a trial. But hopefully we could control the reflux this way since there won't be food in his tummy to throw up and aspirate, get better absorbtion directly into the intestine, and get some weight gain happening.