Hunger

August 16, 2011

Well, the adventures with Maddox continue. We met with his GI doc last Tues, expecting to hear that Maddox was normal, just a little guy, but normal. Turns out that isn't the case. Maddox is not eating enough and is showing some signs of malnourishment in his blood work. He won't eat more than 1200 calories and he should be eating between 1500-1800. His white blood count was also low, so they rechecked that. (we haven't heard the results yet).

They are also checking him for Shwachmann-Diamond Syndrome. It has to do with the pancreas not working properly and troubles with bone marrow. But I am not too convinced he has that, and neither is the Dr.If he does have it, it is easily treated with enzymes, although he would need a bone marrow biopsy 1x/year.

The Dr also said that we need to do a feeding tube for Maddox. One that goes through his nose. The reasoning behind this: Because Maddox has never eaten much (because of the allergies and reflux), his body is in an aneorexic type state, so he doesn't feel hungry like he should and he fills up quickly. Which is why he isn't eating enough food. I met with our family Dr and he agreed with the plan, I talked with our nutrionist and she also agreed and has seen very good results with children like Maddox.

My biggest concern is the feeding tube. They don't sedate the children when they place the tube in through their nose and it is very uncomfortable. I also don't know exactly when we feed him with the tube. The Dr mentioned feeding him while he sleeps at night, but Maddox moves around so much at night, I don't know how that would even work. I would be afraid he would pull it out while rolling around and let the food go into his lungs. I obviously have a lot of questions for the Dr. I am waiting to hear from his nurse to see if she can get me in touch with some families who have done this before (Dr.'s idea). As soon as I ask my questions and talk with a family we'll schedule the appt, which I am sure will be right away.

sigh

I was hoping this month would be a nice relaxing month of hanging out at the beach and gearing up for school. next year.;)

So, that is what's going on around here. just tying to feed Maddox and sneak calories in where I can. We did go campling this past weekend. I'll have a post about that soon.