Our ups and downs

Yesterday went well but today is a different story. L woke up not wanting to eat breakfast, and I said alright, well at least you can drink some of your formula… HA! Yea right! He or his body decided that it wanted to reject it, and puked it all up (twice). Normally this is an indicator that he is not well, but it doesn’t appear that his ammonia levels are elevated. He seemed to be in a decent mood, more mellow than I am used to, but certainly in a good mood. But it gives us a good cause to worry about it nonetheless. Ultimately I think if he continues on this path, we will not have a choice but to go ahead with the feeding tube. However, in the mean time we are trying to avoid this as best as we can with added medication to increase his appetite.
The worries with the G-Tube are that he will pull out the plug or button, whatever you want to call it. He doesn’t get the consequences of what happens when he pulls it out, nor the possible damage he can do and the infections he can suffer. While there are contraptions to place around his belly i.e. a corset or an ace bandage, it is my fear and worry that he will still find away to get to it and pull it out. I would like to think that he’d surprise me and not mess with the button, but I have little faith in that.
It is frustrating because finance-wise it is creating a vicious circle in which we are trapped in. Ultimately we both have to work to provide food, shelter and transportation to not only L, but also the other children. However, if he continues to go into the hospital once a week, twice a week and so forth, one of us might have to give up our job and then what? This is almost impossible to think of.
And then the services for intellectual and developmental disabilities in my community, well they are lacking the essentials to support families with special needs children and family members. With the economy the way it is, some of us folks can’t get into the big town, which takes about 45 minutes to get there, and well gas money. So in addition to helping my son survive, I will venture into the research and advocacy of individuals like him.

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