Tuesday, February 8, 2011

The Plan

The doctor called yesterday. Here's the current plan.

The doctor is wondering if the formula I'm making for Ava might have too much fiber and sugar in it. If so, it can actually speed-up her gut motility which would give her body less time to absorb needed nutrients. We have no history of iron testing done prior to last May, so we aren't able to document anything before that. Ava does have a history of anemia, but without the actual ferritin (iron) levels, we can't tell if it's dietary or not.
So, for the next 6 weeks, Ava is going on a canned g-tube formula so that she can have a completely controlled form of nutrition and we can hopefully create a baseline for her blood levels.

Anyone who knows me knows how I feel about canned food for tubie children, but I understand the need to do this. It is being used in a diagnostic capacity, and even though I don't agree with this form of nutrition, I know that, in the long run, this is in Ava's best interest. Everyone involved understands that this is a short term test and she will be put back on her blenderized diet ASAP.

That said, I must selfishly admit that I'm secretly looking forward to taking a break from making formula for a little while. I've been blenderizing for 2 years now, and I'm tired. I would NEVER put her on canned formula for that reason, but I'm trying to look at the bright side of this whole thing.

We're a little concerned about Ava keeping the canned formula down...but the doctor has said that we can add a little bit of rice cereal to make it "heavier" in her tummy, so I hope we don't have any issues with vomiting...I guess we'll cross that bridge if necessary. 

I must say that I really like this doctor. She's taking the conservative route, looking at Ava as a WHOLE person and making sure that it's not something that can be easily fixed with diet before trekking into the more invasive things like IV iron injections or bone marrow biopsies.

Ava also had a bunch of blood work and fecal studies done. As of now, only the reticulocyte count has come back...and it's low, VERY low. Reticulocytes are immature red blood cells produced by the bone marrow. So, to me, this means that her bone marrow isn't doing what it's supposed to. The reasons online ranged from cancer to low iron.  We just have to wait to see what the big picture is with the rest of the blood work.

I feel the stress starting rise again. We've been out of the medical roller coaster with Ava for about 2 years. She's been really "healthy" and we've just plugged along with no bumps in the road. We're starting to hit some bumps...I think we knew it was a matter of time.

We hope it's her formula and all she needs are some tweaks to get it just right. But I can't help beating myself up thinking that I might have caused this problem with how I've been making her formula and the ingredients I've been using. But I kinda feel that if her motility was too fast, wouldn't she have other deficiencies? I would think other vitamin levels would be "off". I'm trying to justify to myself that I didn't "cause" this...but I'm not doing a very good job. I've had my cry about it...but we don't know anything yet, so I need to just calm down and wait for all of the information to come in.


  1. I also have a "tubie" who is 6 years old. She eats ok, but won't drink anything. We have never found a diagnosis on her, but we wonder if she just doesn't FEEL thirst. It is a total guessing game all of the time, so don't beat yourself up too much! I also think as parents are the best "guessers" for our kids! I just found your blog today and I've really enjoyed it so far! It is great to have some one who can relate! Thanks!

  2. I'm a new follower from the blog hop! I can't wait to read more of your posts.