Food Trials

Food, we all need it to survive. But what happens when, for whatever reason,  you can't eat or eat enough? For some it means a feeding tube. What happens when you are a 4 year old who  likes food and desperately wants to eat but can't? This is where we are at with Deklin. He misses eating, he wants to eat, he doesn't seen to care anymore if it makes him sick or not. He just wants to eat. In January we started food trials again with him and he is enjoying that. We have a growing list of both fails and passes. Food trials are hard because a "fail" can manifest itself in a few ways. Sometimes it's obvious like vomiting or bad stomach aches, other times though it isn't as obvious. Sometimes it's more behavioral, how do you figure out what is normal 4 year old moodiness and what is a food reaction? Other times (like now) its a rash that comes on more than a week after the last "new" food was introduced. The rash is hard because some things for Deklin like wheat are fine initially, but react after eating it a few times in a row. He has also been refluxing a lot again, so not sure if he is having a mild reaction to one of the new foods, or if he just refluxes anytime there is anything in his stomach. One other issue is some days his stomach works better than others, and on the bad days he wont tolerate anything in his stomach, allergy or not. There is also the issue of him getting excited over a food (bananas) that ends up being a fail. As frustrating as this process can be, I am just thrilled to be taking this step forward. Deklin is also very happy about being able to eat again.

Deklin's doctor and I have talked about blending food and putting it through his tube for food trials with the hope of eventually moving toward a full blended diet if possible. This will allow me to trial a food without having him eat it. This way if it does fail I don't have to give him something that he is excited about just to take it away. Now every food I give him to eat orally will be something we know already passed. Also as he gets more okay foods we can supplement some of his commercial formula with real food. The problem was that to put food through his tube the food needs to be fully blended into a thin liquid consistency so it wont clog his tube and I don't have a blender good enough to do this, and they are expensive to buy new. We have however recently had a wonderful company step in and help us make this process a little easier by providing us with the blender necessary to do all of this. (go to you tube and type in "will it blend" this blender should do the trick)   I am so so thankful for the generosity.



Deklin has GI and Pulmonology appointments coming up as well as an MRI so I will do an appointment update soon. 

FEEDING TUBE AWARENESS WEEK Valentine's day

What is the best thing that has happened with tube feeding? What benefits have you seen? What progress would you like to celebrate?

I really wanted to do a big long post on this tonight. unfortunately it's that's not going to happen so here's the quick version. When Deklin stopped tolerating feeds he started losing weight. In a matter of months he had dropped  dangerously low and the decision was made to switch to a gj tube. Without this tube he would have continued to wither away right before our eyes. His G tube and his gj tube have literally been life savers for him. These pictures were taken about 7 months apart. The one on the left was take shortly after he switched to the gj. He is SLOWLY starting to put weight back on and will hopefully start looking like the picture on the right again soon.

Official 2013 Feeding tube awareness video

http://www.youtube.com/watch?v=0jBX05Gs-RQ&feature=youtube_gdata_player

Motility testing

Deklin has motility testing done last week to try and determine why he is so c chronically constipated, and why he doesn't tolerate G-tube feeds (feeds into his stomach). As usual we left with more questions than answers. The thing with motility is out can vary from day to day, we know he deels with delayed gastric emptying, so we may have just caught him on a "good" day. The test showed that his stomach and small intestines are contacting like they should be, but the large intestine didn't contact until meds were given to make it. The good news is that the large intestine did respond to the meds, the bad news is he was in severe pain with every contraction. We also didn't catch any retching episodes during testing because he was given anti nausea meds just before the test because he was vomiting. They did take biopsies during the scope so we are still waiting on the results of those. We have a follow up with his GI at the end of the month to go over every thing and come up with a plan.

FEEDING TUBE AWARENESS WEEK (day 1)

DAY 1 TOPIC: Tell your story. Educate others about what life is like with a feeding tube and with your child’s/family member’s/your medical condition. Why does your child/Why do you have a tube?

Deklin was born a full term presumably healthy baby. When he was just a few hours old Deklin nursed for the first time, afterward he spit up everything. At the time no one thought much of it, a lot of  babies spit up. The next few months were a continuous loop of feedings and spit up. At 4 months old Deklin was diagnosed with GERD and put on medication to try and control it. It was around this same time Deklin also started getting frequent respiratory illnesses and was diagnosed with reactive airway disease. The next few months were a blur of spit up, vomit, and nebulizer treatments. Just before Deklin's first birthday he was hospitalized for pneumonia, and it was then that his doctors discovered he was aspirating. After many tests, medications, and hospitalizations it was discovered that Deklin was aspirating liquids he took in orally as well as from his reflux. After many discussions his doctors and I decided to go ahead with a Nissen (surgery to prevent reflux) and G-tube placement.
When Deklin's G-tube was originally place it was used for venting (he couldn't burp because of the nissen) and supplemental feeding. Over the last year Deklin's reflux has comeback with a vengeance, and he stopped tolerating G-tube feeds. After frequent vomiting losing almost 10lbs over about 4 months the decision was made to convert Deklin's G-tube too a G/J tube.
Deklin is currently fed an elemental formula 23 hours a day directly into his intestines via his J-tube and We use the G for venting/draining his stomach. If it weren't for Deklin's tube he wouldn't be able to get (and keep in) the nutrition, hydration, and medications that keep him alive.