Talking to your team about a blenderized diet

*I am not a doctor. I am not providing medical advice.*

You’ve done some reading, you’ve looked at formula ingredients lists, maybe you’ve talked to others who feed real food through a feeding tube, or maybe you’ve just realized that you’re human (or your tubie is a human) and there’s no medical reason you/they can’t eat food like all the other humans….

Image by silviarita from Pixabay

Now what?

Now it’s time to talk to your medical team. While some who feed real food do so without letting their medical team know, I personally believe it’s always best to keep your providers informed. However, the experiences of those who’ve made the switch to real food are so widely varied. Sometimes their medical providers are entirely on board from the start. Sometimes medical providers need a little convincing, but they’re willing to be tacitly supportive, if not actively supportive. And sometimes they’re just entirely resistant to the idea.

We’ve got your back, whatever happens. Keep reading for suggestions on how to start the conversation with your medical team, as well as some ideas on how to handle the response from your providers – whatever that response is.

My purpose here isn’t to talk you into a blended diet, or to provide you with research or factual information on the benefits of blended diets. I feel like Crunchy Tubie Mama does an excellent job of making the case for blended diets and providing tons of facts and research – I couldn’t even begin to duplicate that. Go check out her website, and consider joining the Blenderized RN group on Facebook.

Before You Even Think About Talking to Your Team

Do the research. Is it safe for you or your tubie to be fed food? Does your or your tubie’s condition have dietary restrictions? Do you know anybody with your or your tubie’s condition who eats orally? Does your hospital/your nutritionist, in fact, have patients with your or your tubie’s condition who eat orally?

How much do you know about nutrition? Do take some time to familiarize yourself with the basics of nutrition – even if you’ve been feeding oral eaters for your whole life. Get a sense of how many calories you need, how much protein/carbs/fat and where you might get those nutritents from, read up on how to ensure you consume a varied enough diet to make sure you’re getting sufficient quantities of the micronutriets, etc.

But while you’re doing all that, also consider that few American humans eat 100% of the RDAs of every nutrient every day. Some days, we oral eaters consume a LOT of Vitamin C, and other days not so much. Some days, we get enough calcium, some days we don’t. A little variety is pretty normal. Is it IDEAL? I don’t know. But I do know it’s TYPICAL.

Starting the Conversation

Don’t ask, tell. You’re not asking for permission. You’re informing your providers that you’ve made a decision and you’re letting them know. But you’re being very polite about it.

“I’ve been reading about using a blended whole foods diet with a feeding tube, and I plan to start doing that.” (If this feels too aggressive for you, you can go with a variation such as “and I’d like to start that,” but be careful not to say anything that at all sounds like you’re asking for their permission. You’re not.

From there, you can ask for their support and help. “Are there any specific dietary guidelines I should follow?”  or “I have a pretty good idea how I’m going to start, but if you have any suggestions, I’d definitely take them into consideration.”  (Notice the tone here – you’re taking what they have to say as advice, but you’re the one in charge. Notice that I didn’t type “Do you have suggestions on how I should start?” Important aside: be sure to have done enough reading by this point that you’re telling the truth when you say that you have a good idea how to get started.)

You’ll probably want to know what your calorie goal is, if you don’t already, and if there are any restrictions or requirements for your diet. (You can research this for yourself ahead of time – the internet is your friend here. How many calories would a typical person of your age, size, and weight goals consume? Do you have a medical condition that might impact this? Does your diagnosis have a Foundation of some sort, and does that Foundation have information on good dietary choices? For example, my kiddo is a kidney transplant recipient, and the National Kidney Foundation is a great source of information about nutrition specific to kidney disease.)

A good question to ask of your medical providers is “what would you recommend for oral eaters?” Remember, you’re going to be feeding the same diet you (or your tubie) would be eating if you (or they) were doing it by mouth – so you can follow the same advice they would give those eating with their mouths.

You could ask how many patients they have feeding a whole foods diet. “How many other patients in this clinic are using a blended diet, that you’re aware of?”

Above all – stay positive and upbeat here. You’re excited. You’re happy. You’re enthusiastic. You’re not going to let any nay-saying discourage you.

Bonus hot tip. Don’t use the word “internet” or, especially, “Facebook,” unless your provider is supportive right out of the gate. These words too often cause providers to assume you got your information from Uncle Bobs Info N Stuff dot com.

Push Back Against the Ignorant Advice and Concerns

On this specific subject, it’s like providers lose their minds sometimes. You might hear “a blended diet sounds great, but we’re too worried about clogs for that to be a viable option.” With a quality blender and the right technique – and sometimes using a strainer – clogs are rarely a problem. Assess this concern for your own situation. If you have a button, for example, and you DO clog it up to the point that it can’t be fixed, it’s a simple matter to swap it out at home. This is not a big deal. (And bear in mind that MOST clogs can be avoided or fixed.)

Another one is “oh, that sounds great, but your feeding tube is just too small for this to work.” Yes, this might be a valid concern, but chances are it isn’t. Most people over the age of 1 have a tube that’s big enough to handle real foods.

Or how about “a blended diet is too risky from a bacteria standpoint – formula is sterile.” Yes, formula is sterile until the jar’s opened, then it’s just like everything else. Are you using sterile feeding tube supplies (the feeding pump sets are not sterile)? Likely not. You’re using CLEAN supplies. If there are people with your diagnosis eating food orally, sterility likely isn’t a legitimate concern. Reassure doctors that you’ve cooked food before, you know basic food safety rules, and you’ll always always use an ice pack if you’re going to have your feed out for longer than an hour. (And then actually do all that, there’s no reason to give yourself food poisoning and then look like an idiot in front of your doctors.) (We’ve got some awesome products to help you out with this – insulated feeding pump bag covers, insulated syringe totes, etc.) If it would help your providers feel better, they can go over food safety with you.

If your Provider is on Board

That’s great! Ask them for resources. Ask them for guidelines on nutrients. They could hook you up with prepackaged blended foods (Nourish or Real Food Blends). They can help.

If your Provider needs Convincing or is Reluctant

You can approach this a few different ways. You can just get started and let them come along for the ride. Or you could try to talk them into being supportive. I personally tend to go path of least resistance on many things, and in this case I personally would just go ahead and let them come along for the ride, but if you want to bring in research, or ingredient lists, or maybe compare the nutrient info of their recommended formula against the USDA’s recommendations… go for it. Note, I’d try to avoid committing to following any specific recipe. A commitment to START with their recipe, fine. But don’t back yourself into a corner on this one. I’ve seen so many hospital-provided blended diet recipes, and it’s difficult to believe they were written by people with college degrees related to food. Don’t lock yourself into using these formula-duplicates.

If your Provider is Completely Against the Idea

This is tricky. I cannot tell you what to do, but you still have options. I decided, for us, to just do it anyway. I told them I was going to start giving real foods, let the subject go, started giving my child bits of baby food, and then let them know a few months down the road how it was going. I 100% knew that food was safe for my child, and I knew the dietary restrictions that went along with his condition. Another option is to find new providers. If you have other providers available – even if you have to drive a bit more – this might be better in the long run. I certainly don’t think any doctor who won’t support me in something like wanting to feed real food instead of chemicals, sugar, and oil is really worth my time or my money. We faced a bit of a battle at first with our providers, but they came around pretty quickly once we got started. We would not still be with them if they hadn’t.

Please note, I do not ever advocate LYING to your providers. About anything.

Does your Provider Have a Valid Point?

Some people truly are not candidates for using real food. FEW people, but it’s not outside the realm of possibility. If your doctor seems to truly believe real food isn’t an option for you, you need to evaluate what they’re telling you. Be sure to get a clear answer about WHY you can’t have real food. If it’s due to your diagnosis, are there others with your diagnosis who eat real food (with their mouths)? What would they recommend if you were oral eating?

This is definitely something that requires a second opinion. Ask other blended diet users (not your doctor) to recommend blended diet friendly doctors in your vicinity, and make an appointment for a second opinion before making any final decisions.

HOPEFULLY at this point, your providers are at least tolerant of your blended diet ways, and you’re well on your way to experiencing the joy of blending up just plain ol’ food for your feeding tube! Enjoy!

http://bit.ly/blendeddiet

Dealing with Doctors: Questions to Ask As you Self-Advocate

This is a reprint of an old post I have over at Teddy’s blog.

This is essentially an article about how to be a good patient. And I know you know I don’t mean the “shut up and do what they tell you” type of good patient.

Too many doctors these days are too busy to really take the time to sit and have a conversation with you. (Especially OB’s – those prenatal visits need to be longer than 10 minutes!) We have always chosen doctors for our family that will take the time, and we lucked out with Teddy’s nephrology team being so awesome because we were hardly in a position to be picky in the beginning  – though we certainly would have switched by now if we were unhappy. But I talk to too many people online who have questions – very serious questions – about their or their child’s health and they’re having to turn to the internet for information that should be coming from their doctors.

Yes, it would be nice if your doctor sat down and chatted with you for 10-20 minutes about test results, current concerns, what’s going on with you or your child, etc. But they rarely do. But that does not mean that they WON’T if you ask.

So ask. You NEED to ask! You should NOT have to search the internet for information about a test you’ve just had. Your doctor, who is looking at the results and went to medical school for the sole purpose of being able to discuss those results with you – should be able to provide you with information specific to YOUR case. You should not need to turn to Facebook with questions like “our doctor said x, what did she mean?” Your doctor, who is the one who actually said the thing, should be able to explain herself in every day language.

I am NOT discouraging you from doing your own research. Just the opposite, in fact. I’m saying that the Google can’t tell you, for example, what the unique set of lab results you have really means, and it can’t tell you how concerning they are in YOUR unique situation. Your doctor can. But sometimes you have to ask them to.

I know it’s difficult to come up with intelligent questions when you’ve just been handed some new information, but we’re not always given the opportunity to process before discussing with a doctor. (You should ALWAYS be able to call or message your doctor after your appointment with followup questions, though.) I know I usually need a day or two to do some research on my own before being able to formulate truly good questions.

But sometimes, you don’t need really good questions – you just need SOME questions, and you really need to ask those questions more or less immediately. Keep these easy questions in your back pocket. (Literally, if it helps. Take a notebook to EVERY appointment, and write these questions on the first page.)

– Can I have a minute?

– What does this mean?

– What were the results of this test exactly?

– What is the normal range?

– What does this test tell us? What doesn’t it tell us?

– Is this concerning?

– Does this need to be treated?

– What are our options? What are the alternatives?

– Do we need to treat this right away? What happens if we wait?

– What does this word mean?

– What is your recommendation?

– Can you please explain that again?

– Can you draw a picture or is there a drawing or photograph we can look at? (Super helpful – our urologist drew us pictures at several points when Teddy was in the NICU. I had the nurse make a copy of one of them for us. I laugh now, because the procedure was so simple in comparison to our knowledge base NOW… but at the time, we were overwhelmed and it was all new to us, and the picture was so important to our understanding.)

Those questions should give you a good foundation of information. I personally think the most important one is “what does this mean?” It’s all-purpose.