Feeding Tube Awareness at OneTrueMedia.com

How have you been raising awareness this week? What else could we do to raise awareness?

This week for Feeding Tube Awareness Week we have kept in contact with the school about our daughters changing eating needs, made some Tubie Friends, one to send out, and some to share with John Hopkins when we see them again on Friday.

We have also spoken with everyone we see about feeding tubes especially when they ask up about our kids stuffed animals with feeding tubes. They have been told about the benefits of feeding tubes, how they have saved the lives of our two kids, save the lives of many people every year, and will continue to do so. Here is our video on how feeding tubes have impacted our lives.

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Another video with 222 other families who all tube feed as well I believe made by the Feeding Tube Awareness group

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Finally Mailing the Duck

As if waiting a whole day beyond when we found out we could mail the duck off to the toddler was a long time to wait (ok to a 6 yr old it is) we finally got to mail the duck off this morning to the toddler waiting for a Duck Tubie Friend.

 Here is Ellie walking down the hall at the post office with both the duck and Mumble in her hands

 Stuffing the duck in the envelope

 Look who is in the back ground

 All inside

 Sealed up and ready to go. At this point someone from behind the counter asked what we were and if we knew the child the toy was being sent off to. She was really surprised that we do not know this child especially with how excited that Ellie was to send off the special toy. As we told them the story behind Tubie Friends and showed them Mumble and talked about the purpose of these they got really excited and told us they can't wait to see what other toys we bring in too send off.

Leaving with an excited child and only Mumble in hand. The duck has been sent "flying" to its new forever family!

100 Day List for Ellie

Chantelle's 100 day list homework

I could carry 100 "papers."
I could not carry 100 "couches."

I could eat 100 "fruit snacks."
I could not eat 100 "ice cream scoops."

I could put 100 "skittles" in my cubby.
I could not put 100 "shoes" in my cubby.

I wish I had 100 "water melons."
I am glad I do not have have 100 "wolf spiders."

Medical Records being Copied NOW!!!

I just got back from the military records office where I asked for a copy of all the records I had for her and all the records they have for her. The main records person who has been working with our family let me know the records are not in date order but she could get me a copy today. I informed her a copy today even out of date is awesome as we can take these records and place them in order ourselves so we have them ready to drop off on Monday.

The rush on getting a copy of her medical records is her pulmonary appointment that was supposed to be the end of next month is now next Friday. Yes that is Friday the 17th!!!! And this appointment is with the comprehensive team at John Hopkins. My afternoon will be spent placing 4"-5" of medical records in dated order. I am just glad the copies I have are already in date order (whew!).

Awareness Topic: Coping with Tubie Friends

Some how I got my days and posts switched up so I am posting what I going to post from a prior day here. This is easily done with multiple apts in a week, having your life constantly turned upside side down with back tracking steps, and trying to fit everything that needs to be done plus fun into your life so the kids continue to love life. This fits here perfectly after last night and the pictures of Zach and Ellie helping make our first batch of Tubie Friends.

Topic: How is coping with a feeding tube made easier with a Tubie Friend?

Kids with Food Allergies states coping with a g-tube can be difficult for children. The site talks about several mothers who have performed “surgery” on stuffed monkeys with the goal to help make coping easier for their children. Once the surgery was completed the children learned about their feeding tubes, tube care, getting medication, and other treatments through medical play. These mothers have their children gained better coping skills because of their Tubey Monkeys.

Another such program Gabe’s Chemo Ducks started for the same reason. Back in 2002 Gabe was diagnosed with cancer, and his mother trying to help him understand what was going took a stuffed duck, added a chemo port, and through play he began to not only understand but found comfort in his medical toy. Eventually, this blossomed into a non-profit organization reaching out to hospitals across the nation.

Just like the mothers within Kids with Food Allergies and Gabe’s Chemo Ducks, as a mother I too have that creating Tubie Friends have helped my children learn to cope with their medical issues. For nearly eight years our home has been blessed to have Tubie Friends in our home. Our children have lovingly fed their babies and stuffed animals. We have made many Tubie Friends over the years. Our children have learned about tube and site care, feeding, button changes, giving meds, nebulizer treatments, other medical treatments. Our Tubie Friends have had sleep studies, IV’s, nebulizer treatments, blood pressures taken, hearts “listened to,” blood taken, and surgery.

When going into surgery the child sees their Tubie Friend being put under too then they wake up with their beloved Friend at their side. Their beloved Friend has “awakened” with them with an oxygen mask on just like they have. This helps to reduce fear both going into the OR and waking up in the recovery room. I have found the lengths that the Children’s Hospital staff goes through with these children amazing to not only make the children feel more comfortable but also confident with all the procedures and oftentimes invasive procedures they must face.

Tubie Friends have been found in the school classrooms, school nurse offices, with new caregivers, sometimes new doctors and nurses, home health nurses, and are wonderful teaching aids. They teach about the care of the child. Tubie Friends are often found with specific tubes, wires, ports, IV lines, feeding tubes, oxygen tubing, sleep apnea probes, pulse-ox monitors, anything and everything relating to the child.

When a child seeing their Tubie Friend with just as many tubes and wires as he or she has, they do not feel as different and gain confidence. This confidence is further gained as self-care skills improve concerning the tubes and wires all over the child. Nurses and care givers can have the child clean or “feed” their special Friend reducing anxiety levels. Doctors and nurses can use the child’s friend to explain in advance what procedure will take place. As the child gets older he or she can use their friend to explain to their friends what is going on and why they have so many procedures, tubes, and wires.

Because Tubie Friends have been such an asset to our family we have teamed up with http://www.facebook.com/tubiefriends to help other families get Tubie Friends as well. What is Tubie Friends?

Tubie Friends was started by a group of moms whose children have been or are currently using a feeding tube as a primary source of nutrition. We're currently working with several Children's Hospitals across the country to provide stuffed animals with feeding tubes to as many children as possible, preferably before they go in for surgery. We've seen what a difference something like this has made for our own kids and want to help make the transition from eating by mouth to eating through a tube as easy as possible. In addition to bringing comfort to the child, these "Tubie Friends" can also be used as a teaching tool for family, friends and caregivers.

This year I have three children that want to have Stuff a Toy birthday Parties so we can get stuffed animals with feeding tubes then donate some to John Hopkins Children’s Hospital and others to children for Tubie Friends through the Tubie Friends group. Our first party will be near the end of May, one will be on Halloween night, and one around Christmas. We are hoping to toss in a couple more parties throughout the year as well.

The kits we will be using will be from https://www.bdaybears.com/teddy-bear-and-animal-kits.html and will come complete with an animal, t-shirt, birth certificate, heart, and stuffing. While there are 24 animals to choose from we will likely give party guests only 1-2 animals to choose from making the purchasing easier for us.

Learning Self Feeding Skills Again

This morning Ellie wanted to do her breakfast feed by herself so I helped her learn how to dump the formula into a syringe and watch it slowly go down. She had a blast doing this while she did her nebulizer treatment as you can see from the following pictures

 Just love her eyes in this picture

Making Tubie Friends

Making Tubie Friends

Today was a fun and exciting day for both Ellie and Zach. I had received 2 packages while the kids were at school. Of course Ellie was dying to know what was inside both. The bigger box was full of flat (dead) stuffed animals. Upon seeing them she asked all excited, Are those the Tubie Friends we have to fluff and stuff and make alive?" I let her know they were. Her curiosity got the best of her and she was bouncing off the walls to know what was in the smaller box. Also she just HAD to know if we were going to "fluff and stuff" the animals tonight. Originally the plan was not to stuff them tonight. But she was so bummed about not being able to eat dinner, yet so excited about the Tubie Friend Project and finally getting to "fluff and stuff and bring to life" some animals, that I could not tell her no. 

The first thing she did was to take the 5 AMT buttons we had received and lined them up, then picked 3 unstuffed animals for tubes. She picked out 4 shirts, (we got 5 buttons, 5 extensions, and 5 shirts from AMT to use with this project). 1 button was going to replace the button that Ava chewed the middle out of from her penguin. 

Thank you Ava we now know that the buttons are very solidly placed... A 2nd button was needed for our Dr Monkey, our display and explanation toy for the project. This toy will be used as we tell about the project and that the toys are coming with buttons, some are coming with extensions, and others are coming with buttons, extensions,  t-shirts, and syringes. Every toy given out through Tubie Friends will have a MIC-key or AMT button, and either a g-tube, j-tube, jg-tube, in special circumstances we can add other items such as trach's or other medical devices that can be attached. We have one mother that has found a way to attach a port that is removable using velcro for her TPN/g-tube child. The possibilities are endless with these wonderful medical/teaching/comfort toys.

The other buttons went to a duck, lion, and unicorn. The duck is off to a toddler very soon where the toy will be greatly loved, the unicorn is off to John Hopkins Children's Hospital GI clinic, and the lion well he was claimed by our 7 yr old who had a feeding tube for 4 years.

Well I told Ellie where the big bag of stuffing was in the craft room and sent her off to find it. Within a few minutes I had a giggling bouncing 6 yr old come bounding into the dining room where I was already preforming "surgery" and adding buttons. With total excitement exploding from her entire body she took the first toy (the unicorn) and lovingly and carefully started stuffing this toy. Soon she was excitedly helping to stuff the unicorn. Zach was in and out as the lion was next ready. Later he came back to discover his sister had taken over the stuffing of the lion and was not happy about that. However, his unhappiness was short lived as he and Ellie finished up the lion together.

Once the duck was stuffed I stitched the backs of all three toys so they will not come unstuffed, then both Zach and Ellie playing in front of the camera with their Tubie Friends and the 2 they helped with as well.

 Showing off in order Mumble the Penguin, the Duck off to its forever friend very soon, Dr Monkey, Pink Unicorn, and Brown Lion (still waiting to be named)

 Unicorn is off to John Hopkins, and the Duck off to a toddler with a g-tube

standing with the duck 

 showing off the unicorn's button (not happy to learn she can't keep it) 

Me: No Ellie you have Lilly doll with a button and Mumble with a button

Ellie: But MOM! I do NOT have a unicooorn! Pleeeease caaaan I keeeeeep it? I just really need a unicorn with button tooooo!

Ellie: No Ellie this needs to go to another child who needs a Tubie Friend, you have 2 already

Ellie: But mom! I seriously do not have a unicorn yet, please can I keep it? It is pink and so cute and so soft!

....and the tears flowed yet again tonight (sigh)

 trying to hide her tears and heart break for the camera

 just to cute

 holding all the toys at once, her arms could barely hold them all

 Both Zach and Ellie with all 5 toys

 and the silliness and fight for the camera begins

 and the camera focused on Ellie and Mumble here...

 had to fix the shirts and extensions to "stop the leaks"

 just hanging out for the camera

 peek a boo ducky

 peek a boo Ellie

 see that button hiding there

 look at those eyes

 Dr Monkey reading a felt x-ray

felt x-ray and button shot

Finally getting the much needed supplies

Just spoke with the John Hopkins peds GI clinic again today (I think this makes three times today alone) and they have been able to help sort out the supply mess with Apria!!! We finally have supplies AND formula coming for Chantelle. They are supposed to be here tomorrow! For right now she is staying on the Bright Beginnings Formula, however she may get switched back to the Neocate, we will see how this works for her being only on this. I really wish we could do the blendarized formula diet for her, however, right now we do not have a Vitamix, the only blender that will mix the formula in small enough particles that it will be able to go through her feeding tube.

Also we are in the process of switching her button from a mic-key to an AMT to trial her on that brand and see how her body reacts and responds to it. We are hoping for less infections, granulomas, and other issues. This shipment should come with 2 buttons, then each month after that (unless we have to use our spare button) we will get one button.

Day 5: Awareness in the Medical Community

Friday, February 10^th

Topic: Why is there a need for greater awareness in the medical community? Explain a situation where a clinician did not understand the impact of tube feeding. (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.)

Feeding tube awareness among the medical community is important because sometimes physicians do not see the big picture when it comes to learning to eat. While this process is natural for most children to learn. Others find learning to eat nearly impossible. Why? Because 31 facial muscles and 6 cranial nerves are required to produce each swallow.

Are feeding problems physical, psychological, family, functional, or disability related disorders? Feeding problems impact the whole child, at the cognitive, physical, and emotional levels. Additionally, the family is also affected because the parents have to deal with and siblings are marred by the gagging, retching, choking, and battles with every meal.

Very few within the medical community understand the pain and strain families face when a child has a functional feeding disorder. Few understand complex and frustrating process required in getting unwilling children to eat, or the complex interdisciplinary team required. When a child truly is terrified to eat parents must employ the pediatrician, nutritionist, occupational therapists, psychologists, speech and feeding therapists who are also trained to handle and work with oral-motor/sensory/behavioral/and medical issues, additionally the team may require social workers to coordinate the team, and a nurse practitioner.

Why such a complex team to hopefully teach a child to eat? Eating is an essential skill that is required survival and proper development. If the child does not learn to eat and gain proper nutrition development delays will increase, decreasing the chances of living a normal life. Additionally, parents become more worried and the child becomes more uncomfortable.

The cost of a child with a feeding tube is expensive, and there are very limited resources for families of children with feeding issues.

The approximate cost of the average child with a feeding tube and specialty formula can run upwards of $40,000 or more if there are complex medical needs. The most common reasons to have a feeding tube placed include congenital birth defects of the mouth, stomach, trachea, or esophagus, swallowing disorders, breathing/swallowing coordination problems, aspiration issues, or lack of adequate nutritional intake. These may cause short-term or permanent feeding tube placement. The goal is to increase the nutritional intake to a healthy level to improve the overall quality of life. Finally, the determination of the length of time will be determined by level of medical needs.

One situation we ran into with an ER team and the lack understanding regarding our son and g-tube issues. He had g-tube accidently pulled out. We had been informed by the GI team (just over a 90 minute drive) that if his tube had ever come out there was a short window of time to get the feeding tube replaced. As soon as we realized his feeding tube was missing we found his button, called the peds office. Unable to fit us in, we were instructed to take him to the ER for quicker replacement.

Upon registration we let the ER staff know what was going on, including that our son had a latex allergy. Finally, two hours later (well past the 30 minute window) we were being called back to a room. By this point his stoma was almost closed. We informed the ER nurse that our son was 100% feeding tube fed and we were now 90 minutes past the 30 minute window to get the button back in his stoma and that we had never replaced a button before as the button was still fairly new as he was under a year old.

Again we sat in the treatment room, this time for another 90 minutes or longer. But this point my frustration turned to anger as I had informed every nurse who stopped in that our sons stoma was closing tighter and tighter and we needed to get a button. Finally, the doctor came in took a look at his stoma, then left and took his time coming back. At this point I was beside myself as they returned with latex gloves, q-tips, and a foley catheter. I did not argue against the gloves as I was not willing to wait for them to track down latex free gloves.

However, furious and in tears as they pried open the stoma using the q-tips, lidocaine gel, eventually the foley catheter was able to fit into his stoma. We still had to take him to the GI team the following day where they had to open the stoma more due to our ordeal in the ER. However, the GI had better medication so our son was not screaming the whole time. We were also sent home with a larger foley incase his button popped out again to prevent the stoma from closing. We were also sent home with latex free gloves to keep on hand ensuring he was not handled with latex leaving rashes again.  

Changing Eating Habits...

Well we made it through our first day with new eating habits for Ellie today. During the appointment today I am not sure she really understood what the doctor was saying when she said "primary nutrition via feeding tube, NPO for liquids, all meds via feeding feeding tube, and limited fun foods orally, but 100% tube fed until further notice."

I let her eat her lunch that we took with us as the drink was thickened knowing this would be her last actual meal for some time now. By dinner time she was starting to realize what NPO meant and that meant through her feeding tube. Well her "dinner" was thickened with some baby cereal to help make it more filling. However, one nice thing was that we were able to give meds and do her breathing treatment at the same time as her feeding. Poor girl was so tired though and was falling asleep by the end of the breathing treatment. So I let her go to bed and we finished her nebulizer treatment while she slept.

This new eating style will take some getting used to for her (and us) as we are going to have to make sure she does not sneak especially drinks to try and get her lungs to heal up...

Thursday Topic: Attitude and Perceptions

Thursday, February 9^th

Topic: How has your families and friends attitude and perspective changed towards tube feeding. What has awareness of the positive benefits done to change perceptions?

When I first learned our youngest son would be getting a feeding tube I was scared more about the tube sticking out of his little body than the first surgery. I was frightened due to the “what if’s.” What if I accidently pulled out his feeding tube, what if I could not change his button, what if I… and the list went on and on.

There were other concerns I had too. Babies were supposed to be fed with a bottle or from mom not through a tube. Babies were supposed to be burped not vented through a bag or a syringe. Would my baby ever be able to burp once they wrapped the stomach around sphincter? What would happen if he got sick and needed to vomit? What would his body do? Just to many questions left my head spinning that first night he was in the hospital and I had been told he needed not only a g-tube but also the nissen.

Not only did I start educating myself about the procedures, cares, and what to do when I brought him home afterwards. However, what I was not prepared for was the on the spot training after his surgery, being sent home and left alone to deal with my child’s new way of feeding.

While the new feeding methods did not take long to develop a routine, the sudden surprises would keep up on our toes. The tummy venting that exploded like a volcano out and over the syringe. Getting him out of bed in the morning or after naps only to discover the feed went to the bed not his stomach. Discovering the extension was closed when trying to push formula or medicine and have everything explode all over the couch, wall, floor, and ceiling, leaving kids looking shocked the giggling hysterically.

Then came the blendarized diet with many of the same experiences. First the blendarized diet formula was to thick causing explosions everywhere. Sometimes something would get stuck in the button or extension and the pressure backup would cause an explosion causing kids to explode. Other times we would find the other kids in a food or water fight using the feeding tube syringes, explaining “but mom they shoot so far and well.”

With two kids with feeding pumps and our youngest with other medical devices we discovered quickly we were killing strollers to quickly so we purchased a radio flyer wagon with rubber air filled tires. With our wagon very similar to the wagons found at the Children’s Hospital of Colorado especially after we added an IV pole (ours was detachable, theirs permanent) we decided to paint our wagon so it would not be confused any longer. We also made one side detachable giving a portable seat if needed.

The benefit to the wagon was that we could lay the large oxygen tank down sideways still giving both kids plenty of room to sit in the wagon. We also rigged a place to put the pulse-ox, apnea monitor, hang both feeding pump back packs, while making both kids comfortable. We also had  rigged a large golf umbrella to the IV pole giving shade during summer months when in Utah, California, or Colorado as we have traveled regardless of the kids medical issues.

Having kids with medical issues have changed our families perspective to be more accepting of anyone regardless of their situation. Having had to live in the Ronald McDonald House as a large family has made us grateful for our house and able to accept any living condition. When having to live as a large family in the Ronald McDonald House as a large family you have only one room. It is much like camping but you are living in a hotel sized room as a family of 8.

Having children in and out of the hospital you discover you can have a picnic anywhere. A picnic on the hospital lawn in a good weather a treat, in bad weather a picnic in the lobby, in the exam room, or even on a hospital bed can become an adventure. You learn to make every day an adventure.

Children of families with a medical child/ren learn not to make comments that rude or deeming towards other families but supporting instead. Your children learn to accept everyone. They not only accept, but they offer to play with, help, read to, and become friends with children with medical issues because they have learned to look beyond this.

I have seen this with my children personally. They look out for those typically considered the underdog. They help them at school with their homework. They help them with getting to and from classes if needed. They are friends to them. They stand up for them and do not let others make fun of them because of their looks.

Having lived at the Ronald McDonald House and having been at Children’s so much our children have been exposed to so many different children. Being a military family they have been exposed to all races. This combination I feel has made prepared them to be more caring. Then add in our religion and that we are teaching the children from a very early age about charity and the importance of service and serving others. I pray the children the children not only grow to develop a strong testimony of Christ, but become strong Members of the Church of Jesus Christ of Latter Day Saints with a desire to keep serving their entire lives.

New Team for Ellie

We met with our new ENT at John Hopkins Children's Hospital today and I really like this team. For the first time we have a comprehensive team for children like her. We talked about Chantelle and her issues, symptoms and, the temporary relief she experienced after her laryngeal cleft was filled in Colorado. The relief lasted for a while but with the last few months she has been choking and gagging more with foods and liquids. According the the ENT this is consistent and normal with laryngeal children like her.

However, here at John Hopkins they use a shorter lasting repair. This puts the children in surgery every 3 months because if they wait 4 months the children are in trouble and having severe aspiration issues. The team here uses a comprehensive team approach and uses speech, feeding, GI, pulmonary, ENT, and other specialists to ensure all the needs of the child are met.

At this point Chantelle has been moved back to all tube feeds until further notice to allow for her lungs to heal. She has been on prednisone to many times and had bronchitis and to many lung issues from aspiration as well. Going back onto all tube feeds should allow for her lungs to heal, this in turn hopefully will also allow her to grow and gain weight better. Additionally they are going to run a full genetic testing panel to try and determine what exactly is causing her complex medical issues.

Also getting in with this team will get her pulmonary appointment moved up. Although better is this pulmonary specialist is one that deals specifically with children with laryngeal cleft and aspiration issues like her. While the other one is great with children, they feel this doctor will suite her needs better. Finally, with this team in place these doctors all meet regularly and know the kids and their needs.

Academic Achievement Awards Ceremony, Elementary School

 Hey there Corbyn

 Found Jairon in the group of kids

 We see you too Ellie!!

 Zach with his class just waiting for things to start

Ellie's teacher and the principal

Hey there friend!!

 Ellie's class with their awards

 Zach's teacher

 Peek a boo!

 Jairon's teacher

 I did it!!!!

Jairon's class their awards

 Corbyn's teacher

 Look what I did!

 Corbyn's class