At five this morning, I shot out of bed to the sounds of Madi getting sick in her bedroom. As I sponged her off, stripped her bed, wiped her mattress and got everything re-situated in her room, the thought hit me: 'Well, there go some more much-needed calories.' Probably not something most parents think of while throwing sick-y sheets in the washing machine, but it's a common thought for me.
Madi has never really been what you would call a fantastic eater. But since she got sick it just all went downhill from there. I used to think that it was because her sick old heart worked so hard just to keep her alive, her body didn't have the extra energy to expend to be hungry, or to digest the food she did eat. And that was a lot of the problem. Now, post-transplant, we are in the same boat still. You would think with a good heart, this problem would've resolved itself. I am finding that this is not the case at all. Since Madi is still not at the point where she can communicate in detail how she is feeling, it's up to me to guess: is it because her medicines make things taste weird, or because they kill her appetite? Or maybe it's that she just doesn't understand what a hunger pain is and mistakes it for a stomachache? Maybe a combo of all of the above? I just don't know, and that makes it all the more frustrating.
We do supplement with Carnation Instant Breakfast and PediaSure when she will accept them. But she gets sick of these things, and who could blame her? I feel as though I am forever stressing about the next mealtime. It's usually a battle of wills.. me begging her to eat-just one bite, maybe two-and her out and out refusing to even try. I am getting better at trying to just let her be and discover foods on her own, but there are plenty of days when I seriously want to put myself in time-out, because that way I can sit in the corner and have a cry all by myself.
In the days post-transplant, a feeding tube was discussed, but from the very start I was against it. Of course, if she was steadily losing weight and never getting any sustenance, I would have gone for it. But she doesn't necessarily lose weight, she just doesn't gain it either. For all the benefits a feeding tube would have there are significant downsides to it as well. I know of plenty of kids who will not eat anything by mouth anymore due to the fact that they aren't used to having to eat because the tube is there. I have struggled with my decision, and many a day I have questioned it, but in the end I feel that it would cause more food issues for her. With her heading to school in the fall, it would just be another big step backward. The other main consideration is that a feeding tube presents a constant infection risk, and for transplant patients of course, that risk is always much more dangerous.
So onward we go..trying to figure out ways to slip calories in the foods that Madi does eat. It gets complicated, though, when basically the only things she wants to eat are cheese sandwiches. Thankfully she likes plenty of butter. :) I wish that I could just take some of the extra pounds I have and give them to her. Anyone ever heard of a fat transplant?? Ha ha.
I suppose we will just chalk it all up to another way that life post-transplant will never be uneventful. I am very grateful, of course, that she is here and mostly healthy. That is the main thing, the most important thing. I will do whatever it takes to be sure that she gets everything she needs, and of course some of what she wants as well. It may be that she will get the things she wants only after she eats a meal covered in butter, but hey, moms are nothing if not ingenious.