When this whole mess started and I was still in the hospital I got a lot of not very understanding people who kept chanting to me "Breast is Best!" not even considering that only breast milk was NOT best for my child because of her disorder. I know that some children with fatty oxidation disorder still are able to breastfeed but each child's tolerance of fat is different and Charlie did not do well on just breastmilk. I pumped religiously to keep supply, and we found that she could tolerate some breastmilk! I was happy to give her the immune boosting benefits. Aside from nutrition, there came a point where she was taking almost an hour to eat 30-40mls (about 1oz) which is not efficient for her. She was losing weight due to all the energy she was taking up by eating by mouth. The doctors let me know that putting an NG tube in would be beneficial.
At first I did not want an NG tube. I felt like she could do it, this would somehow prevent her from ever eating by mouth again. I agreed to have one put in but stressed that I did want her to keep feeding by mouth and then whatever she didnt take within 30-40 minutes, we would put through her tube. After that she started growing! She was gaining weight, slowly but surely and seemed to have more energy throughout the day.
We have had the NG tube now for about 3 months. It has helped her grow like a champ. She has gone from the 15th percentile to 50th! I place it myself every 2 weeks but now that she is getting older, its getting harder and harder to keep it in. She is confined to wearing gloves most of the time to prevent her from pulling it out. Putting one back in is stressful and tortuous. I am paranoid about her pulling out her NG while the pump is going and aspirating. Anyway, the risk of the NG is outweighing the benefits now. We have decided to move to a G-Tube.
This was an incredibly hard choice because I really did not want to put her through surgery. Anesthesia is more risky for kids with metabolic issues. But the benefits of a G-tube for a child with an FOD is a long list. She sleeps through the night so I could set up a continuous feed and sleep instead of having to wake up every few hours to set up a feeding by NG and worry about her pulling it out. If she is sick, it provides an easy port for feeding and meds. I wouldnt have to put her through the painful task of replacing the tape on her face every few days, the scary process of replacing the NG tube every other week, she wouldnt be annoyed by something on her face, plus people wouldn't stare as much. I don't mind, people are curious creatures, but I know that it will be an issue when she is old enough to care.
I know a lot of parents worry about the tube, worry about their kid being 'different', and it is not an easy choice to make. However, unfortunately I foresee feeding (at least for now) being a constant struggle, and I want to do what I think is best for her health and well being. And the G-tube for our family seems to be the best option. We are waiting for a surgery date right now. I would appreciate any input from families who have a g-tube, I really don't know what to expect.
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