Saturday, June 08, 2013

A New Change

I have written about Ammon's issues with his feeding tube before. Right after Leah's baptism, I took Ammon out to the van because his clothes were soaked from the feeding tube. I laid him down on the floor of our van and changed him and cleaned him up and then promptly fell apart. I really fell apart and that, in turn, caused Ammon to sense my weariness and worry and he began to cry. He's smarter than I am, however, because he asked if the guys that were still at the church would help give him a Priesthood blessing. Jim, Chad and Kevin participated in giving Ammon a blessing that the open hole would close in and the wounds would heal. Both Jim and I got the same, distinct impression that we should get Ammon to eat so we could remove the g-tube and have it stitched closed so the site would completely heal but that can't happen until we know Ammon can get enough nutrition and liquid in his body to remain alive and healthy.

Jim took that prompting to heart this week and Ammon has not eaten anything through the g-tube for four days now. He is having to take some medication for a urinary tract infection that cost $1,200.00 (yes, that's right) and so we put that "gold" medicine in his Pediasure mixture and tell Ammon that he's drinking gold and can't waste one little drop. We have been doctoring the milk mixture with Nestle Quik so he will drink it. We are also trying all kinds of soft foods. The guys gave him a peanut butter sandwich the other day (without honey or jam) and that was completely stuck everywhere in his mouth. That wasn't a good thing to try. He ate some yogurt this morning but he takes such little bites and small sips that it takes so long to finish that we basically spend our day thinking of things he can eat more quickly. I think the chewing may never really happen. He mashes most food with his tongue until it breaks down and he can swallow it. He loves Club crackers and spreadable cheese and will eat as much of that as we'll give him. We let him try Cream of Wheat yesterday and didn't get too far with that but we won't give up! He loves regular, white milk and drinks that quickly.

The button still leaks but not nearly as much as it has. He can go through the day without us having to change his shirt every hour. I'm not having to wash sheets twice a day and I'm not quite so worried about taking him somewhere in public. His bowls are improving as well.

We appreciate the family members that included Ammon in your fast last week. It helped! It's working. There are obvious dangers in removing the tube due to his physiological make-up. We'll have to have a lot of confidence and the blessings from all the doctors before we do that, but at least this is taking all of the pressure off the tube and moving it around and it looks like the hole is beginning to fill in more. Hopefully this will all work out and be solved before he starts school in August.

Send suggestions about foods he should try that are easy to break down (melt, crumble, soft, etc.) Send  smoothie recipes our way. I don't know if he would like them but I think I'm willing to try anything to entice him to eat.

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