Saturday, May 15, 2010

Ambrose is doing great. He has been spending all day (13-14 hours) off the vent. I just hook him up to it when I put him in bed for the night.
About a week ago he spit up 15 times between 3 am and 6 am. (He is on a feeding pump over night.) Then he was fine. It happened about 6 weeks ago too. He had a Nissen Fundoplication when he was about 9 weeks old. This surgery wraps the top of the stomach around the bottom of the esophogus to make it a one way valve so food can go down but not come back up. He had severe reflux prior to this and could barely keep any thing down. About a year ago he started being able to spit up and generally does it a couple of times a day. They checked it by upper GI when he was hospitalized in Feb. It was still intact but may have loosened up a little.
Sophia also had this surgery but not until she was 1 1/2. Prior to it she had 3 life threatening (8 weeks in PICU on vent) pneumonias. After she was much healthier. I really think it saved her life, which is why we got it so early with Ambrose. Hers also loosened up and she did seem to aspirate her spit up and got sick. We had to admit her to a different hospital as our usual hospital had no room available. Their solution was to put in a G-J tube in place of her G-tube.
In this case there are two ports inside- one that goes to the stomach and one into the small intestines. Medicines and anything that isn't a thin liquid have to be put into the stomach. What goes into the small intestine cannot make it back up. The problems are that it has to be placed in interventional radiology using fluroscopy. It cannot be changed at home. The tube is very narrow as there are 2 openings in the same diameter that used to have just one and it clogs very easily. We were constantly struggling with trying to unclog it. Believe it or not you use Coke to do this. Also she steadily lost weight as you cannot absorb as much of your nutrients in the small intestine. Fortunately she had extra reserve from steroids and thyroid issues.
Wow. I didn't intend to write a big thing about that. Hope you learned something.
I will post more cutie-pie pictures soon.
Thanks for reading and have a great day!

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