Try Thickener before a Feeding Tube!!!

With his Tube which we named "Noogie" and then Tube Free!!!!!!

We were informed that the next step of the whole feeding tube process was to slowly introduce liquid by mouth but only if it had thickener in it.  Thickener?  Huh?  What does this mean?  Well, it means that there is this 'stuff' out there that is specially designed for those (young and old) who have trouble drinking or eating thin liquids.  I had never heard of this before so obviously I had no idea what to google at the time.  Once I did I was a research queen.

There is something called ThickIT that I found it at Walgreens in the isle next to boost or ensure.  This is a powder that you can put into anything liquid EXCEPT breastmilk.  For some reason the properties of breastmilk break down the thickening properties of the powder (lesson one I learned after spending $ and time trying this method).

There is this other magical stuff called Simply Thick (http://www.simplythick.com).  It is the gel type stuff that you squeeze into ANYTHING liquid and it thickens it up.  However, you can only get it online (at least here in Utah) and it is mucho expensive.  After spending over $150 buying and re-buying boxes of tiny packets to use I found another approach.....make your own homemade Simply Thick by using xanthan gum.

Xanthan Gum is a powder that you can buy at many stores (call ahead to see if they even carry it).  I found that all of our whole foods stores carry it but still kind of pricey.  Then I found that WinCo. sells it in their bulk section and it is so cheap I could jump for joy.  It is also sold online and even on Amaon.com.  All you have to do is mix 8 ounces of warm water with 3 tsp. of xanthan gum powder and blend it for 13-20 seconds in a mixer or blender and presto!  Really inexpensive homemade thickener.  The ONLY downside is that you HAVE to keep it in the fridge and it only lasts for like 5-7 days.  There are a few Youtube videos with the steps in how to make this if you are interested.  You can also buy xanthan gum online and do not get sucked into buying name brand because it is all the same stuff.

This is my favorite youtube video that goes into the detail in how to make your own Simply Thick  (http://www.youtube.com/watch?v=lqhkOiHJgK)

Back to my Ng Tube story then.  So, my husband and I decided to go ahead and try feeding Noah like one ounce of thickened liquid.  And guess what?  He didn't choke!!!  Could we have started with the thickener before the tube possibly?   This is the part that upsets me.  I feel 100% in my soul that Noah only needed some thickener to his bottles and NOT the stupid NgTube.  It took us a full month to get Noah to take a bottle again after he forgot how to suck, swallow, and even like eating again.  He also had to relearn how to feel hungry and want for something to take the hunger pains away.  This is a very lengthy and heartbreaking process.  So my advice to anyone who has a child who sounds like they might be aspirating...........TRY or at least ASK about THICKENER BEFORE THE FEEDING TUBE!!!!

ALL medical staff will 100% of the time chose to tube feed because the risks of pneumonia are great with aspiration and no nurse or tech or doctor wants to be responsible if they tell you to go and try thickener first and risk them aspirating and possibly getting pneumonia.  We decided to take the risk because Noah's lungs have been perfect since birth and he had been aspirating for months prior to the tube and never got pneumonia.  After a few weeks of him eating from the bottle again on Honey level thickener (just means it was as thick as honey) I took him if for a second swallow study.  They were shocked that he was already weaned from the NgTube and already eating so well on the Honey thickener that they said I could drop down a level to the Nectar level of thickener.  I knew it!  I knew Noah could do it and I knew he never needed that stupid NgTube.  Once again this proves that you have to be persistent and do what you know is best for your child.

He is still currently on thickened liquids but we have been able to cut it down to half the amount of nectar thickener per bottle (as I type this he just turned 7 months old).  I don't see him being able to drink thin liquid for a long time as he still chokes on thin liquid (even medicine).