Waterworks

Is there ever a time when defeat is welcomed? Once again I lose. Mckenna's tube feeds will be increased again tonight. I am broken, defeated, hurt, upset, angry, frustrated...the list goes on. Why does God think our family is strong enough for this!? Grrr

Tonight increasing from 340 ml to 400 ml. Will see if that's enough of an increase to help McKenna gain. The feeding clinic said they are here to support us but until Kyle gets on board they are not comfortable moving forward. Meaning once again a clinic is done with us and we are left to figure this out on our own. I am so angry at him I don't know what to say or how to be a team with this situation.

McKenna is doing better each month. She still needs tube feeds obviously it is off the tube some and that's an improvement still from September when she was full tube. As we increase the tube she will most likely decrease the oral intake which than eventually means full tube, and then comes the gagging and puking and dry heaving. I am so angry I just want to scream and yell and cry. I haven't given up on her and I feel like increasing the tube feeds is a sign of giving up. I never want my children to think that!

My prayer, since praying is all I can do at this point, is that McKennas body will tolerate the increase and it will not impact her oral intake but will increase her weight enough to get her to a point we can try the wean again, the megace again, and eventually get her off the tube. I'm completely drained and now have to go get the twins up from their nap and act happy and like life is easy.