Day 107

We're still waiting on an answer to Holden's feeding tube dilemna. Some feel like we shouldn't do the surgery for the button at all. Some feel like we should wait for a couple of weeks... I'm still not sure why. Some feel like we should go ahead and do it now and get him moving in the right direction.

The doctors who want to keep him just like this don't seem to understand what his life is like. Sure, he has a life, which was more than we could hope for a short time ago. But now it's time to start looking at the quality of his life, and throwing up around the clock is not the quality of life I want for my child. It's not okay to accept less than that just because he's a heart kid. We should be just as worried about his comfort as we would be for a kid who was born with a normal heart... Would any doctor let another otherwise healthy child throw up like this, and just accept that as normal? And he'll be on oxygen as long as the vomiting continues, because we can't work on his lungs when he's already dehydrated and throwing up the meds he needs. It's a neverending circle, and I have had it.

The reality is, it could be a year before Holden gets his new heart. Can we make him live like this for another year? What will the constant vomiting do to his esophagus? How detrimental is it going to be if we can't keep any of his meds down long term? Will his heart get worse? I don't see how it can't... What other options do we have besides an NG tube that is not working for him?? We ask all of these questions and in return we get a lot of sort-of answers, with no concrete solutions. It’s a state of being that is still as maddening as it’s always been.

I feel more than a little helpless today, and I am mad. I don't want to be, but I am. And I don't really care if I'm overreacting at this point. It's just all adding up to a little more than I can take. I realize how selfish this makes me sound. I realize most of my worries have been just that - worries about me. I am so focused on what I need. What I want for him. What I think is fair. Yes, I am selfish.

The truth is, I'm running a little low these days and can feel myself getting very close to the edge. The edge of what? I'm not sure. I think I'm too afraid to look down. Tonight I'll try to regroup. To collect some peace and calm and hold on tightly. Holden needs me cool and collected and focused on what he needs- Not what I need for him.

In the meantime, I'm going to keep my baby as happy and untangled as possible. I'm going to try and remember that in our version of normal, we can only shrug our shoulders and count our blessings. And there truly are many.

So here’s to answers and plans of action. To trusting. To hoping. To asking for prayers to be answered, yet again.