Wow, we made it.  Lorraine talked to Johnny Hudson (neuro-NP) this morning while I was at work.  She told him that we would rather not give Mikie the drug Reglan, since it has so many possible side effects, like depression and seizures. My first search turned up many websites about the ongoing lawsuits involving it. Dr. Fann thought that it might get his stomach moving.  I might be inclined to try it when we knew that Mikie’s stomach was full of bile and then see if it actually did anything.  But it is not something I would want to try long term, so what would be the purpose of using it at all.  NP Johnny said that even aspirin has side effects.  I would have loved to have been there, because I would have asked him to tell me about the lawsuits involving aspirin.  He did say we might be able to get out Friday if all went well.  I called her from work and she gave me the update. I told Lorraine to go back to the nurses’ station and have them call Johnny and tell him to call me at work.  Another neuro-NP by the name of Christy called me so I gave her a pitch for letting us go home today.  I explained why I said no to Reglan, and what we had tried last night with Mikie’s feeding that went quite well. She said they would like to resolve the feeding tube issue with me but I assured her that we could follow it up with a gastroenterologist and get that taken care of. She agreed with me when I said that break the feeding up to smaller doses during the day.

I’m not as convinced that the length of the feeding tube is really the problem any more, though it may be contributing to it.  By having the long tube about 10% of Mikie’s small intestine is not be utilized.  Much larger sections can actually be removed and yet people are able to live quite normal lives.  I think the problem is actually the location of Mikie’s stomach. I believe that when we introduce feeding into the jejunum that the body then releases the bile into the duodenum but because Mikie’s stomach is in such a position to allow the bile to reflux into the stomach (not the esophagus).  I saw this even when we fed him pudding by mouth, as after checking it in an hour or so it had taken on a greenish tint, meaning it had bile added to it.  But it seemed that when food was then stopped that it then started on its merry way.  Adding food to the jejunum seemed to prevent food from leaving the stomach.  When I look back at the times we were feeding him around the clock then at the same time we were also drawing bile off his stomach to prevent him from heaving it up. I don’t know who came up with the idea to get a whole day’s nourishment through a feeding tube while he slept, but if you think about it you will find it not sounding like that great an idea.  How would you like to eat all your food while you slept?  We make it a point to move around after we eat (or we should) and not to eat just before we go to bed.  I think it is a matter of convenience.  Instead we are going to try small meals more often.  Right now he seems pretty eager to eat by mouth so we are going to try some of the other things he used to enjoy, like oatmeal and applesauce and mashed potatoes and gravy and other things that I can’t remember right now.  His stomach is crowded so he doesn’t have room for a lot, but as long as he is willing we’ll try it.

It’s almost 11 Pm and he is tucked into bed sound asleep.  I know that he knows he is home.  While he was gone we developed a couple of good habits.  We got used to not having a TV on so since we have been home we haven’t turned the TV yet.  I’m calling DISH TV tomorrow and if we are outside our contract period I’m having it disconnected.  The newspaper is going as well.  We need the extra time to move next door and then remodel our house.  I’m moving Mikie and the computer in the same room.  I really enjoyed blogging while being close to Mikie. TV can just eat up so much time!

I’m off to bed.  I wonder if I will wake at 5 AM and think about either calling or going to the hospital, as has been my practice.