Thursday, March 27, 2014

NG Tube Dilemma

Tonight Audrey pulled out her NG tube for the third time in the past 10 days or so. She doesn't pull it out intentionally but rather steps on it while crawling around. Since she gets tube fed three times a day and each feeding takes about an hour, that is a lot of time to expect a 16 month old to stay still! I try tv, reading, playing with various toys, but she inevitably wants to crawl around and she's so fast I can't always pull the tube out of the way. The past few times we had grandma, an ICC nurse, replace it but we are out of tubes now so I would either need to go into Amplatz or have the home health nurse replace it. The thing it, I really don't want to replace it at all.

The main concern right now is not nutrition but hydration. We just talked to the pediatrician on Tuesday at her 15 month well-baby visit about this and since Audrey is past what her weight "should be" according to her previous growth curve, she could even lose a little and be fine. We would prefer for her not to lose any, of course. With her recent kidney surgery, however, if she gets too dehydrated it could really hurt her kidneys and we definitely don't want that! Ryan and I feel like the pediatrician is just trying to cover herself with wanting to tube in right now and admitted that the amount the dietician said Audrey "had to have to prevent dehydration" is a bit much. (40 ounces a day. The equivalent of 5 glasses of water. Some adults don't even drink that much!) She also said Audrey did not look dehydrated at that time and the tube had been out for over half a day at that point. The thing is, when the tube is out Audrey nurses A.LOT. more and also drinks from her sippy cup. I usually haven't had to pump at all during the times the tube has been out. I guess what it boils down to is I believe that her body still has the ability to regulate hydration and nutrition but the NG tube interferes with that process.

Ever since the stent came out, last Wednesday, her eating progress has really picked up! Almost every time I offer food she is now interested and at least puts it in her mouth. Between surgery and getting the stent out most days she didn't want anything to do with food. Lately she really likes strawberries, cheddar bunny crackers, avocado, and cheese. This gives us a lot of hope that we won't have to see more specialists or consider a G tube!

So for this weekend at least we are leaving the tube out. I'm sure she will need it back in soon, but we want to procrastinate as much as possible. :) We'll be monitoring her hydration and will go to the ER to replace the tube is necessary. It will be interesting to see what she will do!

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