This past week was a good week for Ally. On Monday we spoke with Ally's surgeon,Dr. Katz, at length about what Ally's options were as far as feedings went. After speaking with her she informed us that it was imperative for Ally to begin feeding again as soon as possible, mostly to prevent any further damage to her liver caused by the IV fluids. So we came up with a plan and on Tuesday Ally went to radiology and had a catheter put in to her bowel through the fistula. This is basically like a feeding tube in the stomach would be, but it goes directly to her bowel.
Ally has been tolerating her feeds fairly well this week and has been having her feeds increased daily. Once they had the fistula tube established they also began feeding her through her NG tube again. Currently she is up to about 13cc/hour total between the NG and fistula tubes. The major downfall to Ally being fed through her fistula is that it commits us to another surgery because the fistula will never close with the tube in it. Dr. Katz's plan is to get Ally up to half of her calorie intake through her NG and fistula tubes. Once she is tolerating the feeds at that level, she may be able to come home. Then we would get to have her at home for a couple of months and then she would go to DuPont for a surgery to remove the fistula and a small section of her bowel.
Ally going to DuPont will make it more difficult for us travel wise but it will be good for Ally to be in a pediatric ICU as opposed to a NICU. This is all still probably a long ways off, but the thought of Ally coming home for some of this time gives us something very positive to look forward to.
Otherwise it was a stable week and we of course celebrated the 4th at the hospital. Big sis Ashley even came to visit and the girls wore matching patriotic outfits. Ally is going to radiology again tomorrow to have the current catheter in the fistula removed and a larger one placed. This is due to the fact that Ally is still having a considerable amount of drainage out of the fistula around the tube. To keep the drainage under control she wears an ostomy bag which prevents her skin from being irritated. Hopefully a larger catheter can minimize the drainage out of the fistula. Just to let you know this procedure is in no way painful for Ally, in fact I think she enjoys going to radiology because they keep it so cold there and Ally is a hot tamale Last week she spent the majority of the time smiling and talking to the radiologists, it's like a field trip for her!