Adventures in Eating

James' tube site has degenerated to the point where giving him food through the tube is painful.  We saw his surgeon and it seems that the bleeding is coming from scar tissue around the tube.  Our first GI doctors burned his stoma (area of tissue that tends to grow up around g-tube sites) with silver nitrate in order to "remove" it which caused the scarring.  There is no real solution other than a g-tube revision surgery which would require the doctors to cut off the area of damaged skin around the tube and stitch it back around the tube.  As the doctor said, this isn't really an option at this point.  We are doing everything to help the skin heal (we have already changed types of tubes twice in the last week), but we still need to get food in him.  So we are attempting to wean James from the g-tube.

We were planning to undertake this feat after Christmas.  About one day after we started planning for this event that was still supposed to be three weeks down the road we had to get him off the tube feeds. So here we are.  We are really struggling with everything.  He needs to eat, he knows he is hungry, he can eat, but he refuses to eat a significant amount.  Yesterday we got 100 calories in him between 5 feedings.  So, we had to put food in his tube overnight.  That didn't go well.  We got him the calories he needed but he woke up crying from the leaking fluid several times.  I was hoping when I got him up this morning that things would go better.  He had a full tummy overnight so he was in a good mood but still ready for food in his belly.  He took some sips of water, but pushed the spoon away.  We have decided, after five days, that we won't fight him, just calmly take him out and try again at the next feed when he is hungrier.  We'll see how it goes today but my guess is that isn't going to last long.  We have to get food in him, it isn't an option for him not to eat.  We have good friends coming over today that are going to help.  One weaned her daughter off a tube and the other is an OT.  So, we should be in good hands.  :D

We are really struggling with everything especially because it is such an emotional stress.  We adopted St. Rita as our family saint during my pregnancy with James so she has become an important part of everything we do with James.  We said this novena several times during my pregnancy and James' hospital stays and it always got us through.  The line that jumped out at us and still gives us hope is:

"St. Rita, so humble, so pure, so mortified, so patient and of such compassionate love for thy Crucified Jesus that thou couldst obtain from Him whatsoever thou askest, on account of which all confidently have recourse to thee expecting, if not always relief, at least comfort."

Even when we didn't always get everything we asked for Mark and I always felt comforted, a sense of peace.  Our prayer now is for that comfort for Mark, James, and I as we undertake this task.  We have asked St. Rita to intercede for us to the Heavenly Father that James may be off tube feeds by Christmas.

We love St. Rita.  She really was a remarkable person who sacrificed so much for love of her God.  Would you all be willing to pray this prayer with us?

St. Rita, pray for us.

(The practice of praying to saints is in the same practice as asking one's friends to pray for your intentions.  These friends just happen to already be in heaven and have a direct line to God!)

Our little terror destroying boxes.

With love.