Saturday, January 29, 2011

Digging In

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.2011-01-28 17.54.30

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.)


  1. amy. i have said it before and will say it many more. and i know you are probably sick of it. but you are rocking this out. you are a GREAT momma. everyone wants to do their best for their kid. but you are going above and beyond. i know you've made massive efforts the last month, and i think *most* people after less than stellar results would shrug and say "well, feeding tube it is, i tried." but YOU! you are pushing another step further! a deep fryer. heck, i don't try that many new recipes for my entire family in a month. your creativity and intense research is SO impressive. jackson is so lucky to have such intelligent parents.
    when this battle is his, he will rock it out too, because he learned from the best. praying for extra rolls on those thighs this month!

  2. "armed with information" - love it.

  3. Hey Amy!
    I agree with the above person, you sound like a GREAT mom!! I just wanted to share that I have has weight issues. I was losing so much weight and couldn't put any new pounds on. I had a feeding tube place in sept '09, I still have it. I was INCREDIBLY nervous about the whole thing. I did everything you did as far as research and being prepared.

    The placement of the tube itself, was nothing because I was under anesthesia. The week following was painful. It was managable pain, but painful none the less. Now I can't even feel it. The tube itself wa annoying to have for the first 6 months. Then I got it changed to a mickey button. The button is so small and I can do anything. Its great.

    As for helping me with the weight, ithas helped me gain and keep on about 20lbs. Which I know doesn't sound like a lot but for me with CF, as you already know, thats a lot! I went from 86lbs to 98lbs in about a month. Now I eat food during the day and I do tube feeds overnight as "bonus" calories. I have been able to keep a steady weight for a few months now.

    Once again you sound like a GREAT mother! Keep doing what your doing! And I'll be sending good and fattening thoughts to you and Jackson!