Tuesday, October 21, 2008

CF Woes

Elizabeth had her quarterly CF appointment this morning. Not a happy one. As many of you know Elizabeth is very skinny. Pat, the nutritionist, gets after us at almost every appointment about her weight. Half the time we don't know what to do because Elizabeth just doesn't like to eat. I know, weird. So we've tried a couple strategies and despite these her BMI has steadily made it's way down since December of last year. If it goes down again by the next appointment we get to look at having a feeding tube inserted into her stomach and she will be fed through that at night while she sleeps. Weight is so important with CF. They want as much fat as they can get on these kids not just for growth but when things go wrong and they get really sick they need fat to lose and not waste away. Elizabeth did get really sick just a few months ago and refused to eat for a week. By the end of one week we could see bones sticking out and she looked awful. We are STILL trying to gain that weight back. This is so incredibly frustrating. Most days we go about our day and don't even think about this stupid disease and then we have these days where we are reminded yet again we can't do that. At first I was thinking "OK, a feeding tube, can't be all that bad" until I asked Pat how long they have to keep them in. In most cases if one has to be inserted now at this age it stays in until they are 18-19. If she can't get a grip on eating now she won't as a teenager so they'll just keep it in. All I can think is lovely, one more way she has to be different. Elizabeth loves to swim and while I'm sure she can swim with the thing it will just poke out and others will always be asking what it is. Same with any cute tops that are tight fitting around her middle. And I know Elizabeth, she's going to hate it. She doesn't even like band-aids on her skin. The first thing she begs the doctors to take out after her sinus surgeries is the IV. She could care less that they just roto-rootered her nose and it's dripping blood, just get the darn IV out of her arm :) So yeah, let's add a permanent one to her stomach. I know the tube is better then wasting away from malnutrition but these added little bonuses sure get tiring to deal with. I can't imagine what other parents go through with children who are so much worse off. Elizabeth is very healthy, too skinny, but healthy lungs. We do a lot to keep her that way. And just when you get a handle on one thing something else pops up. Sigh. As always, we'll do what we have to. Doesn't mean we have to like it. As for the next three months we will be creating a chart that will help her count her calories. The poor girl has to eat 2340 calories a DAY to get back up to where she was last December. 75 g of fat and 50 g of protein. I figure we are doing good these days to get 1800 cal in her. So, counting calories to gain weight, never thought I'd have to deal with that :) She loves anything with numbers and loves to chart things so this is where we'll start and I'm keeping my fingers crossed that it works.


vaxhacker said...

How frustrating and scary to deal with! I'm glad she has such dedicated parents who will do whatever they can to see her through this!

1000 Miles in 2021 said...

Oh Christy, what an aweful thing to have to think about. I so understand all of your worries about how she may feel different and be worried about how she looks, how it will be uncomfortable. Ugh! When is her next appointment? Maybe have an incentive on the chart a trip to build a bear or somthing if she can keep her calories up(somthing non-eating- funny most of my goals are rewarded by food). I never thought of counting calories to gain weight-- crazy! Let me know if I can do anything to help.
Love, Megan

Hesses Madhouse said...

Wow! I had no idea. She has looked so healthy and fine to me. Hope she starts to eat for you. The chart's a great idea!