It looks like 24 hours was the limit on sad and mopey this go round. A little venting, a few tears, and just a pinch of cursing the universe, and I was ready to take the proverbial bull by the horns.
I'm taking a two pronged approach to the situation, the first of which was a major grocery shopping spree. At the advice of the dietitian, we are experimenting with more solid foods. High fat solid foods. So I went on a mission for natural (low/no preservatives, meat raised without antibiotics, pesticide free produce) treats that could be made high calorie and high fat. After two days, I have a freezer full of mini tacos, mini cheeseburgers, sweet potato fries, regular fries, mozzarella sticks, mini chicken sandwiches, and nuggets of mac-n-cheese. I also bought a deep fryer, perhaps the most counter intuitive purchase of my life. I've discovered you really can batter and fry anything, from green beans and apples to girl scout cookies. A little egg wash, a little wheat flour, and toss it in the oil. I'm not feeding J an exclusively fried diet, but I am doing a lot of experimenting with what can be done with this marvelous machine. I also re-stocked on Olive oil mayonnaise for dipping. So far, cheeseburgers and chicken fingers are the clear winners, and seeing J's enthusiasm for new foods after his recent rejections of almost everything is encouraging.
Prong two is research. Reading about the what, when, and how of G tube placement, care, and use helped a lot. Selectively talking to other parents who have been where we are is also a tremendous help. I say selectively because I don't and won't talk to just anyone about these things. There is a lot of hyper- negativity and hyper-positivity based on one's own experience that can hinder real information gathering and/or influence my experience before I've even had it. But advice and reflection from people I know and trust is invaluable. Mike and I sat and watched tons of you tube videos tonight too. Laprocsopic placement of the tube, placement, changing, care, and cleaning of the button, and the start to finish procedure of administering bolus feedings are no longer a mystery. I am someone who needs to be armed with information!
Tonight I feel good. Okay, I at least feel better. I have prepared us and Jacks in every way I can at this moment. We are actively following all protocols to try to avoid needing tube feedings. But in the end if the struggle is too great, I know what to expect and feel prepared to face it. I will also know at that point that we did everything we could and that the time is right to ease Jackson's struggle to grow by medical intervention. I read in a friends blog yesterday, "YES, things SHOULD be different. But they're not, and until and unless things change, you have to learn to function and succeed within the reality that is, rather than the ideal that should be." And it was EXACTLY what I needed to hear, and I plan to do just that.
(If anyone would like to see the videos, shoot me a message. They are very informational but I hesitate to post them due to the graphic medical nature of some parts. It should be something one chooses to see rather than a visual assault upon entry.)