A Need For Awareness

The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact. (The goal here is to point out that awareness is needed among all audiences. Certainly there are clinicians who are well versed and expert in this area, however, there is a need for basic knowledge among a wider range of medical professionals)

I want to start this post by stating that we live in a pretty remote area. Our local hospital does what it can but awareness and education is certainly needed in all areas in pediatrics. We are very rarely able to go to our local hospital, even in an emergency when it comes to Owen because we know it will take longer to educate the docter then to just drive the 3-4 hours to Oakland. I have complete faith, with enough time, our hospital will come to know more about Owen's medical needs and be able to handle more and more emergencies.

With that said, here are a couple stories which prove there is a huge need for awareness.
Here is the scene: Owen is 10 months old. He had been home for only 2months and we were still very nervous when it came to taking care of all of Owen's medical needs. He was home on continuous tube feedings through an NG tube (feeding tube that goes from the nasal to the stomach). Owen was having trouble breathing and we decided to take him to the ER in our hometown to see what was going on. They called us into the triage room. We get into the triage room and the RN starts to ask about Owen's medical history. She looked at his NG tube and said, "Is that oxygen?" She was completely serious! I was shocked! This being the first encounter with this emergency room and Owen, it did not instill confidence that they would be able to help us in any way. I could maybe understand that she had never seen an NG tube in a baby, but oxygen? Oxygen every RN should be able to recognize. Here is a pic of Owen with a NG tube and Owen with oxygen.

To me, the difference is pretty clear

The next story happened after I was more aware of what our hospital could and could not do so I was more prepared for the situation.
Here's the scene: Owen was about 15months old. He had recently had his g-tube surgery. We brought him home from the surgery and everything was going great. At the time he was still crawling and we were pushing a pole with his feeding pump and bag on it. Well, he was crrawling and crawled too far from his pole before I could get to him and his g-tube popped out. Because it was placed not long before that, the hole started bleeding. Although Owen's GI doctor showed us how to replace the g-tube before the surgery, we were nervous because it was so soon after surgery. So, we decided to go to the emergency room just to make sure everything would be ok when it was put back in. We get into the ER and they put us in a room. The doctor came in before the nurse told him what happened and he said, "what's that?" pointing at the g-tube. It made my heart beat faster. There we were - scared parents and looking for someone to tell us everything looked ok and he didn't even know what it was. We brought the box the g-tube (mic-key button) comes in so the doctor asked if there was something in the box he could read. That's when Heath and I told him that we knew how to put the tube back in but we wanted to make sure that the opening was ok because it started bleeding a lot when the tube came out. So, the doctor watched Heath put it back in and then they did an x-ray to make sure everything was ok. We were glad that the doctor learned about a mic-key button and was able to see us do it. We just wish we didn't rush to a hospital that didn't do much to calm our fears.

Awareness is important. I hope that Feeding Tube Awareness week continuous to educate people about feeding tubes and that more and more people are comfortable with them, even in the medical field.

Life with a Feeding Tube

Understanding Life with a Feeding Tube

Explaining a day in the life/daily routine of tube feeding and all it requires

Owen's daily routine is a little different from others with a feeding tube because he does not bolus feed at all.

Each night, after Owen goes to sleep, I make a full days worth of neocate formula for the next day.

 

Above is a picture of the jug I use to mix it. I use this jug because neocate is very difficult to mix. This jug enables me to shake well and does not leak! We bought a few jugs that would hold the amount we would need for a full day of formula but this one was one that didn't leak when we held it upside down!

Mixing a full days worth of formula the night before makes the day run smoother :)

In the morning, after getting Owen cleaned up and out of bed (there is usually a big mess of poop/pee due to all the fluids he gets overnight with his g-tube feeds and his tpn), we first grab a new formula bag and unhook Owen from his tubing.

The above picture is a picture of Owen's feeding pump and the formula bag that goes with that pump. We first fill the bag with 250mls of formula (about 4hours of feeding), take all the air out of the bag by turning the bag upside down and priming the air out of the bag. Then we prime the tubing. Priming the tubing is important because you do not want too much air to go into the stomach. For Owen, too much air can cause major problems with gut motility.

After filling and priming the bag, its time to put it into his backpack! Here is a video :)

After loading the backpack we need to connect the extension tubing to Owen and put his backpack on!

 Throughout the day we have to fill the bag. I fill the bag every 3 hours or so to make sure he doesn't run out. I can usually refill the bag while the backpack is still on Owen - he just sits there and lets me do it :)

Here is a video on how to refill the bag!

Owen also takes medications throughout the day. Depending on the day of the month, Owen could have medications every 6 hours, every 4 hours, or just once a day. When it comes time for a medication, we simply pause the feeding, draw up the med using a syringe, push the med through the med port on the g-tube extension set (the closed port in the picture shown below), close the med port, restart the pump, and send Owen on his way :)

We change the mic-key extension set once a week and flush it with warm water daily to keep it from getting clogged with a med or formula (extension set shown below)

On top of Owen's g-tube feeds, Owen also eats by mouth during each meal time (just picks at what he wants) and he gets TPN through his broviac 12hours during the night. The TPN takes up more of the day than the continuous g-tube feeds. Owen's backpack for his g-tube feeds has saved our lives! We have a mobile tubie!

Why a Feeding Tube?

Why Owen has a G-tube - a highlight on the medical condition that requires tube feeding.

Warning: I am in no way a medical professional. This is simply my interpretation of the information I have been given about my son's condition.

Short Bowel Syndrome

Definition: Short bowel syndrome is a condition in which nutrients are not properly absorbed (malabsorption) due to severe intestinal disease or the surgical removal of a large portion of the small intestine.

For Owen, it all started when he was 3 weeks old. Owen developed a disease called Necrotizing Enterocolitis (NEC) Definition of NEC: the death of intestinal tissue. It most often affects premature or sick babies.

 

NEC progresses fast. When the hospital in Modesto transferred Owen to Oakland, it was almost too late. The doctors were sure he wouldn't make it. In the emergency surgery, the surgeons had to remove 60% of Owen's small intestine. It was hard to measure because he was so sick and so little. In a later surgery they had to remove another 5% of small intestine.

Owen was left with less than half of the portion of the bowel that absorbs all of your nutrients. Over time, the body tries to adapt by dilating the portion of the bowel that is left to create more surface area that would be able to help absorb the nutrients. However, dilation of the bowel causes a whole new area of problems for the bowel. The bowel works by contracting to move food through the body. When the bowel is dilated too much, it is unable to move the food through and creates pockets where the food sits there and creates bacteria overgrowth. The food sits in one spot and allows for bacteria to feed and grow rapidly, which causes gas to form.

So, why a feeding tube?

A feeding tube is used in short gut patients to slow the food down through the bowel. If you have a short bowel, the food goes through it quicker. To add to the problem, if the bowel has dilated and you feed it too quickly, something called dumping will occur. Dumping is where the bowel is basically overworked and thinks its being given too much food to absorb so it will "dump" it, also known as diarrhea. In order to feed the bowel slow enough, a feeding tube needs to be used along with a pump. Every body is different, every bowel is different. For some short gut patients, they will be able to eventually eat as you and I eat, bolus. For others they will need to eat at a continuous rate to keep their problem from getting worse.

As of right now, Owen is on a continous rate of feeding 24hours a day. He is also fed a specific formula that has broken down all the components of the formula into its smallest form so that it can be easier absorbed by the bowel.

For those of you that don't know, I wanted to update you on Owen's (our little tubie) status.

He is currently in the hospital and he is septic. He is having symptoms of septic shock but it doesn't actually seem to be septic shock because he recovers so quickly. Please keep him in your prayers as the tests come back and we know more about what is going on. Thank you all who have been praying for him thus far.

Feeding Tube Awareness Week 2012



This week is feeding tube awareness week! Awareness will be hijacking my blog this week, I hope that's ok with you :)

Feeding Tube Awareness has given out a topic to discuss each day.

Today's topic: Video Launch Topic: Why awareness is important to my family - What would be different for me/my child if tube feeding was better understood?

I created an awareness video about why Owen has a feeding tube!

Here it is!

Owen would not be alive today without a feeding tube. He has been tube fed his whole life.

What would be different for our family if tube feeding was better understood?

 For us, the most important thing is to educate as many people as we can so that, as Owen gets older, there are more people that embrase him. I worry all the time about Owen going to school and be made fun of. I just want people to know that tube feeding is keeping Owen alive, he wouldn't be here if he didn't have his g-tube. I would be heartbroken if he was made fun of for something that has saved his life - he has no control over it.

Front Porch Sittin'

It started out as a trip to get the mail . . .

but they love the front porch so much!

Isaiah's face as the cars pass. . .

Isaiah's face as the chair rocks . . .

"Where I come from, it's front porch sittin'"

What can I say, we are country . . . where's the lemonade?

Stacking Colors

Owen was playing with his blocks the other day and started stacking. At first I didn't even notice, but he totally stacked them by color! ALL BY HIMSELF! I did not help him or show him how to do that at all!
I am a pretty proud mama!

The Future?

Owen had a GI appointment yesterday. It was a meeting he had about a million times last year. 

Last week, after Owen's antibiotic was completed we changed his formula from neocate infant to neocate jr. We have been trying to get him on neocate jr for probably about a year now. Neocate Jr starts at 30calories/ounce. Owen came home from the NICU on neocate infant at 22calories/ounce. Up until last week, he was on 27calories/ounce. A lot of things go into why it has taken so long to increase his calorie intake. The main reason being that his bowel simply cannot absorb the calories when they are given in larger quantities. I wish I could go into it all, but really, you just need to know that every calorie/ounce is a huge step for Owen.
When we switched Owen to the neocate jr last week, his belly began to be more distended and gassy. He started to throw up daily, which is what he was doing about every couple months before we started TPN at home. He hasn't had a GI upset in a while, but the neocate jr was a huge step that, I guess, he wasn't quite ready for.
Before, when Owen would have a GI upset, he would be in the hospital getting poked countless times so that they could keep him hydrated as his gut had time to rest. Now, he has his broviac and is on TPN so he has not had to be hospitalized, Thank God! For now, he is on a pedialyte only diet until Thursday and then we will add a cup of formula a day.
Next monday, Owen will have an endoscopy so that they can get samples of the bacteria growing in his intestine. They are hoping to get the exact bacteria that continue to cause his gass and distention so that they can better tailor his medications.

This appointment really got me thinking.

Owen goes back and forth. We know that. I guess we were just hoping that something would be more "normal" by now. Our life is centered around when the next doctor visit is, when his next sickness will come, etc. We will live like this as long as Owen needs us to but at what point do we try to accomplish our goals while living day-to-day, hour-by-hour. With the new year and thinking about what we want to accomplish this year, I can't help but think of all the things Heath and I want to accomplish as a family, as a couple, for our future. Many of these things seem to be unreachable. We have been trying to figure out how to move forward in life while keeping everything Owen needs. Maybe there is nothing more we can do for now but we are thinking about it a lot lately. Maybe living day by day, hour by hour, will be the best thing we can do for Owen. I'm not sure. I just feel like we should be doing more.
There are two huge things that are always in the back of our minds but seem to be things we won't be able to accomplish, at least in the near future.

I would love for Heath to finish his education. How can that happen? We need to support a family. I could go back to work but we would have to hire and train a Nanny which might cost more than its worth. Plus, when Owen is in the hospital, do you think I will be at work? No way!

I would love to get our own place to live. This can't really happen until Heath has a better job, a career, something we can count on. We are so blessed by my mother who is letting us live with her rent free, while basically taking over her whole house, but it would be nice to have our own space and be able to use Grandma as a babysitter every once in a while.

These two things will continue to be in the back of our minds. Hopefully we will find a way to accomplish them but we have to keep Owen's health at the top of our list.