Wednesday, March 7, 2012

On Eating...

On Wikipedia, it says that I like to eat fruit, land plants, aquatic plants, and salt licks.  It also says that I need to eat almost 10,000 calories per day to maintain my body weight.  Sheesh, if I wasn't a moose, I would think I was a pig!

What am I trying to get at?  My friend Timmy's diet is very very different from mine and has drastically changed since he was born.  When he was born, the doctors fed him his mommy's milk through a tube from his mouth all the way to his stomach.  A few days later, though, they took an X-ray of Timmy's chest and realized that Timmy's lungs had milk in them.  So they stopped feeding him milk and started giving him a kind of special food called TPN (Total Parenteral Nutrition) that was inserted right into Timmy's blood stream with an IV which makes my chewing the cud seem downright old-fashioned!  

Before long we found out that Timmy was born with what's called a type 3 laryngeal-tracheo-esophageal cleft which means that his trachea and esophagus started out life joined together at the top.  So when the milk refluxed up his esophagus it was getting into his lungs as well which made him not breath so well.  So the doctors decided to give Timmy a way to pump food straight into his stomach without having to go through his mouth and potentially into his lungs.  They gave him a G-tube about a month after he was born which is a nifty piece of plastic stuck in a whole in his stomach that connects to a pump with a bag of milk.  And VOILA!  Timmy is able to be fed real food, not just the TPN, right into his stomach which helped to minimize the risk that the milk would get into his lungs.

For his first 6 months, for many different reasons, the doctors switched Timmy back and forth from milk through the G-tube to milk through the J-tube to TPN through his blood stream.  A few weeks before he discharged, some feeding therapists helped Timmy take his first sips of milk.  They gave us the tools to slowly start to teach Timmy how to eat by mouth.  In April of 2011, though, Timmy was totally on G-tubed milk and they decided he was finally ready to go home from the hospital after 187 days (SUPER DUPER!).  

I, Mortimer the Moose, would like to take a break from this in-depth docTIMentory to give you a small Arthur update: our monkey friend has recovered well from his G-tube and tracheotomy surgeries.  He has greatly appreciated all the well-wishing, love, and support from so many of his stuffed family and friends.

Now back to our Timmy update:

So we finally got home with Timmy on milk through his G-tube.  Timmy's Mommy and Daddy exposed him to a lot of different tastes so that he could start to realize that his tongue was meant for more than just sucking on his binky.  It is hard for trached kids to have much of a sense of taste since that sense is so closely related to the sense of smell.  The air coming in and out of the lungs doesn't go through the mouth and nose like it does for you and me.  It completely bypasses the mouth and nose and goes through the trach coming out of the neck.  So since it's hard for Timmy to smell stuff, it's hard for him to taste stuff too.  So Timmy's Mommy and Daddy tried hard to expose him to lots of kinds of tastes to help him explore what he could taste.  They've discovered that Timmy likes lots of strong flavors like garlic, peaches, apples, BBQ sauce, and Turkish and Thai food.

At times, over the last 10 months, Timmy has fluctuated between eating orally more and being dependent on G-tube feeds more.  For a while his reflux (food coming up his esophagus from his stomach) was really bad which would decrease his desire to eat with his mouth.  At those times Timmy would have to be feed almost entirely through his G-tube.  During the fall of 2011, Timmy started throwing up more and more. He was very uncomfortable (and this moose was doing lots of laundry!) and the doctors discovered that he was aspirating his reflux/vomit, and it was starting to damage his lungs. This is when we started to get very worried about Timmy.

Then in November 2011, Timmy's GI specialist from Cincinnati Children's hospital decided to try something new to help Timmy eat more with his mouth.  He and a dietitian from Cincinnati came up with what they called a "pureed by G-tube diet".  The goal was to maximize the calories and at the same time minimize the volume in Timmy's tummy at any given time so that the food is less likely to come up his esophagus and damage his throat surgery site. (Did I mention that Timmy's stomach is smaller than that of the average moose-let? smaller still than the average boy his age)  After only being on this new diet for one day, we all noticed an immediate difference in the way Timmy felt and acted.  He suddenly stopped vomiting.  A few days later, we noticed his blood oxygen levels were getting much better.  Then a few days later, he started eating more.  We didn't see a significant increase in his eating habits until in January 2012 he got a stomach virus from one of his many hospital stays.  That took a week or so to get over (during which we were continuing to try to give him his pureed by G-tube diet but he was only tolerating about half of his normal calories).  After he got better, though, he was super hungry so we gave him some pediasure (we were out of whole milk at that point) and suddenly his little boy tummy was replaced by a big moose tummy!  He drank 6 ounces of pediasure in one sitting when before he had only been able to drink maybe one ounce in one sitting.  Timmy's Mommy and Daddy were thrilled but a little nervous...what if Timmy vomits it all up?  But he kept it down and after a few days he was consuming the majority of his calories with his mouth!  His parents cut down on his G-tube puree feeds more and more until he was eating 100% of his calories by mouth.  Who would have guessed that a stomach virus was the answer to Timmy's eating difficulties!

Some days Timmy eats more, some less depending on how well he feels.  But now he has finally made a connection between the hunger he feels and his ability to alleviate that hunger by eating food.

It makes this moose give a WHOOP and want to celebrate by indulging in some chocolate-covered aquatic plants :)

I took a bunch of pictures and here they are:

Timmy's pureed by G-tube diet looks like this when we mix it every day:

8 oz of pediasure and 2.5 oz of turkey, beef, or chicken:

3.5 oz of some kind of fruit or veggie with beta carotene in it and 3.5 oz of some kind of green veggie or apples:

1 Tablespoon of canola or veggie oil and 4 Tablespoons of sugar (a couple months ago Timmy's Mommy and Daddy asked the dietitian if we could replace the sugar with another 3.5 oz of veggie and she said that would be ok):

1/2 cup of dry baby cereal and then we shake shake shake it all up and VOILA it's done:

All that stuff makes about 20 oz of goop which is enough for one day.  When he eats orally, however many calories he eats we subtract that many calories from what we give him through his G-tube.  

Timmy's caloric goal each day is around 900 calories.  At 9am, 12pm, 3pm, 6pm, and 9pm what he does not eat with his mouth we push in that many calories of puree through his G-tube.  Below was Timmy's Thanksgiving weekend schedule which includes all his medication times, trach and G-tube care times, and equipment/supply cleaning schedule.  We put this schedule on his dry-erase board for the benefit of all the family who came for Thanksgiving.  Timmy sure did keep this moose and a bunch of adults busy 'round the clock!  

You might be wondering how we feed Timmy after he's already asleep.  He goes to bed at around 7pm each night after his 6pm dinner, puree feeding, and trach/G-tube care time.  When he's asleep, for his 9pm puree feeding time we simply push in the puree with a 60 ml syringe through his G-tube just like we do when he's awake.  For the most part he stays asleep while we do this.  I can't think of too many parents that feed their kids while they're asleep :)

As good as our Medical Equipment Company is in getting us all the stuff that Timmy needs to be healthy, accidents do happen especially where little wiggly boys are concerned.  Occasionally his feeding extension which connects his G-tube to the 60 ml syringe that we use to pump the puree through will come detached from the syringe (or the medicine port in the feeding extension will pop open by itself).  When that happens we get puree goop on the carpet...not a fun thing to clean up.  We have had to change out much bedding while trying to keep Timmy asleep when this happens during his 9pm puree feeding.

Back in December, Timmy really liked plain whole milk yogurt.  Now we have to mix some sort of extra flavor into it for him to get interested.  It's really important for Timmy to be able to interact with food with no expectations whatsoever so that he won't develop any negative connotations in regard to eating food. So when we weren't depending on oral feeding for caloric intake, we let Timmy play with his food:

At Christmas time he liked green milk.  Green milk he liked at Christmas time; it was sublime...etc.

Even during hospital stays, we tried our best to keep him interested in the bottle and eating food:

In this pic, you see Timmy being Timmy while his Daddy tries to give him a puree feeding using a longer connection to the G-tube called a Farrell bag.  The added length helps Timmy's Daddy feed him even while Timmy crawls around at a 100 miles an hour!

More cute pics of Timmy enjoying his food:

We quickly discovered that eating wasn't fun when Timmy was already tired:

Below, Timmy is enjoying a frozen smoothie with Mommy:

As you can see, eventually Timmy started to let us feed him without needing to play with the spoon which really helped his oral caloric intake!

Just to recap: there were some really good reasons why the Cincinnati GI specialist wanted to try this pureed by G-tube diet on Timmy (and no, one of them isn't to make his parents' lives harder). It's a relatively new thing. They had only tried it on about 200 other kids before they tried it on Timmy.  The other kids that were on it all had a kind of stomach surgery called a Nissen wrap which basically means the stomach is wrapped around itself into a kind of knot that would allow food and liquids to come down the esophagus and into the tummy but not allow food and liquids to reflux up the esophagus and out of the mouth.  The trouble that kids sometimes run into with a Nissen is that they will painfully retch over and over again with no way of releasing out of the mouth what is making them retch.

Timmy was the first at Cincinnati to try this pureed by G-tube diet without a Nissen to start out with and it has made such a difference.  We are so thankful that his GI specialists were able to come up with a way to reduce vomiting without resorting to, in Timmy's case, an unnecessary surgery.  Because of his smaller-than-normal stomach, the Nissen would have made the size of his stomach even smaller which would have made it even harder to keep food down and would have increased the chance that the Nissen would make him retch unceasingly without being able to get relief.  Before the pureed diet, Timmy's vomiting was doing more and more damage to his throat surgery site but because of this change in his diet, the vomiting has completely stopped altogether.  We fully anticipate seeing improvement in his upcoming July ML&B scope due to this change in diet (ML&B stands for microlaryngoscopy and bronchoscopy which is just a fancy way of saying that the doctors put a very thin camera down Timmy's trach and take pictures of his airway and lungs).

All this talk about food has made me famished!  I think I might go lick some more salt.  I wonder if I could die it green for St. Patty's day...

Bye ya'll!

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