Thursday, March 26, 2009

Blenderized Diet Disappointment

For the past three weeks, Harlie has not thrown up. It has been a glorious three weeks (well, except for the whole pneumonia/hospitalization thing). Oh, how different my definition of "glorious" is!

Just in case you don't know - Harlie's vomiting has been out of control for a long time. At this time last year - she was throwing up an average of 40 times per day - and her day is only 12 hours long!!! And if you think I'm exaggerating - I'm not. I had to chart it so the docs would believe me. In May of last year she had nissen fundoplication surgery to stop it from happening. We tried everything first - wanting to avoid this surgery. For some reason - I just didn't want her to have to have it. But then I was told that she would have to have it in order for her to have her jaw reconstruction surgery. Since her jaw would be wired shut for 9 weeks post-op, it would not be safe for her to vomit - at all (much less 40+ times). So, nissen surgery it was. And it lasted for just over 9 weeks - weird, huh? Literally, just a few days after getting her wires out, she threw up. And over time, it has continued to get worse - up to 5-10 times per day (still better than 40, but come on!).

So, three weeks ago we tried a different way of feeding her. Oh, we've tried it all - pump, no pump, slow continuous, faster rates, slower rates, more times, less times, more meds, less meds, added some baby foods, and tried every kind of formula made, etc. Somehow, we must have found the right way (no pump, two doses of 100 mls each in a 30 minute time frame). And for some reason - makes no sense to me - she stopped vomiting. Don't ask me. I have no idea. I just go with the flow and ride the waves that come our way!

I have wanted to get Harlie on a blenderized diet for a LONG time. I have heard that many kids with Harlie's vomiting issues have found a "cure" with a blenderized diet. Hey! We want one of those! But making the change over has not been an easy task. We've tried, but there's always been too many other variables in the mix (her being sick, about to have surgery, recovering from surgery, etc.). So, now that she's getting better, and she hasn't vomited in three whole weeks - I thought we should try it again.


Yesterday was the day. We fed her and then crossed our fingers. The first feeding went down okay. And stayed down. YAY! Then her second feeding went down - and then came back up. Several times. Bummer. Real bummer. I'm very disappointed. It seems that it takes longer for her belly to empty the blenderized diet. So, it's a no go.

The reason why I wanted it to work so badly, is because if she could eat by mouth - she would be eating regular food. It just makes sense that even though the food goes in through a tube that it should be age-appropriate. Plus, I really wanted that to be the cure for Harlie, too. But her belly just can't handle it. There. That's it. For now, anyway. I guess we'll meet with her nutritionist at some point about other options.

I try really hard not to complain. I always try to find the positive - to be thankful for what we do have - and we have a lot to be thankful for. I truly believe that. But, sometimes I just wish that something would be "easy". You know, what's normal for most. I'll be fine. I'm just disappointed right now. It's not like I just learned about it and just tried it. I've been wanting to do this for a LONG time. And then to have it not work, well, I'm just bummed.

But Harlie is fine. In fact, she is so much better. She is playful again and it is so wonderful to see her back! Her oxygen requirement is getting less and her secretions are almost back to normal. Things are better and tomorrow I report to her local cardiologist about how she's doing so we can make some sort of decision on her upcoming heart cath. We should know soon so I can go about making plans!

More later,
Christy

3 comments:

Elaine said...

Christy, what a post!!! So much information and so much effort shown!!! As usual, I'm blown away by your energy and dogged determination. Think of all the balls you keep in the air at one time. So impressive!!!

It's amazing to watch Harlie bounce back from these episodes.

Love Mom and Nana

Ann said...

Christy, sometimes doesn't it make you PO'd that you feel like you have to counter the complaining by finding the silver-freaking-lining in everything?

I'm sorry things are never easy for Harlie and you. That proverbial "break" is having a hard time fining it's way to you. Hang in there. It's always good to vent your frustrations and then pick yourself back up and just keep on doing what you're doing because you're doing a GREAT job!

Hugs,
Ann

Susan said...

I'm sorry it's not working out for you. I'm going to send you an e-mail. Hugs.