A big change afoot

In the Fall of last year we were considering a G tube (gastrostomy tube) for Ayla.  We discussed the procedure and lifestyle change with the surgeon at the requisite pre-op consultation, and she recommended that we do everything possible to get Ayla to eat by mouth again before we put her through this surgery.  I loved this recommendation, especially since it had come from the surgeon herself, who has essentially sidestepped a hefty paycheck in the interest of my child.  Yay for Dr. Mueller at CPMC/Lucille Packard!  With a newly charged motivation to get Ayla eating again, I began taking Ayla to a feeding therapist.  After 4 sessions, Ayla started showing a little progress.  Sadly, however, insurance then refused to pay for the $800 bill and we had to cancel therapy.  Using the tips I learned in her feeding therapy sessions, I practiced with her at home a bit but rather than showing more progress, she reverted back to a state of food aversion. 

We are now going on a year of her being fed primarily through her NG tube and we have again made the decision to get her the Gtube.  It seems a little odd to say but I'm nearly ecstatic.  With the exception of the few short moments following her NG tube coming out by accident, I haven't seen my little girl's face without a tube taped to it in a year.  Her skin underneath the tape is chronically irritated, sometimes to the point of bleeding, and I can't imagine how irritating it must be to have a tube constantly in her throat. 

On February 26th, Ayla's NG tube will come out of her throat and off her face.  She will instead have a tube that gets surgically inserted through her abdomen and leads directly to her stomach.  While she is tube fed, she will still be given primarily Elecare formula.  But with the tube being larger in diameter, we will have the ability to puree food, REAL FOOD, and push it through the tube.  This will give us the ability to experiment with foods to help us identify which foods agree with her and which do not.  Thus far, our ability to do this has been heavily restricted, as it is subject to what she is willing to put into her mouth and swallow.  She probably has ingested a total of 15 different foods, all of which seem to agree with her except dairy.  My short-term goal is to attempt to transition her to the GAPS diet through her tube (assuming she can tolerate it).  My long-term goal is to get her transitioned to eating the GAPS diet by mouth, and then possibly a slightly more normal diet, with the help of feeding therapy.  It looks as though we're in for a battle with our insurance company over getting this covered, but I am confident that our perseverance will yield the desired result.  We will get our girl to eat.

Please cross your fingers or pray or meditate or do whatever you do to help Ayla in a seamless surgery at the end of this month.  We completely depend on your love and support to get us through every step, every transition, good or bad.  We are coping quite well because of your love, your words of encouragement, your sympathy, your help, your presence.  Thank you so much.