Saturday, February 4, 2012

Why Awareness is important to my family.

Feeding Tube Awareness Week
Topic: Why Awareness is important to my family. 

Awareness is an increased ability to understand a situation or set of events. Being aware of a situation allows one to observe and react in the appropriate manner. While many things in life cannot be changed, simply being aware of the surroundings can allow an individual to better if there is problem and successfully develop a solution. This process happens because individual experiences retrain internal neural pathways, repaving new belief, behavior, and perception passageways for the brain. These new passageways later lead to new expectations, emotions, thoughts and assumptions as the process of increasing awareness recreates both the past and the future.

One huge advantage to gaining awareness is the ability to learn how others feelings, emotions, actions, and choices affect their lives. The awareness grows as one becomes a watcher and observer to the life of those they have chosen to follow. However, sometimes the act of following another is not a consciousness choice, but one of necessity. The witness is unaware of the journey they are about to embark on and are feeling stunned, numb, shocked, and unaware of road they must follow.

Being unaware of this path has effects on the individual or family as well. One may continue as if on auto pilot unconsciously following blindly down the path not knowing what emotions, thoughts, or even believes they currently have. If this path is blindly followed as if on autopilot, then life will simply happen without regard to individual or family thoughts, emotions, feelings, or actions.

However, the beauty of awareness is learning and growth. Awareness leads to new internal presses, thoughts, assumptions, and beliefs. New awareness and thought processes are best learned through practice and taking an active role to better understand the situation or set of events facing an individual or family.

How does gaining an increased awareness for feeding tubes, feeding tube benefits, care and use of feeding tubes, and the typical routines involved with feeding tubes benefit the individual and family? Gaining an increased awareness benefits the individual and family in many ways because a support system is developed, one becomes more aware of his or her body, as a group, individually and family wise all will learn more about the processes involved, and finally, the ability to choose to accept this lifestyle becomes easier.

The process of Feeding Tube Awareness has been essential for my family because nearly eight years ago I was beginning this journey. I was treading the well-worn path of others however; I was embarking on this journey feeling stunned, numb, shocked, and very unaware of the journey ahead of me. I was unaware of the future for my son. I lacked a support system, was very uncomfortable with the emotions and nerves of the situation. I was scared more about the aspect of tubes sticking out of my child’s body than I was of him going into surgery. I lacked confidence in myself and my abilities to care for a child with a feeding tube. How would I be able to handle this task?

This thought was utterly frightening for me. How could I manage this task as normal babies drank from a bottle not a tube or a feeding pump? Normal babies were burped by being held and patted on the back, not having a tube a syringe attached to the stomach. Babies are supposed to be burped not vented. During this point so many things seemed wrong and out of place.

In May of 2004 our youngest son was born and started his life in the NICU. He came home without his nasal feeding tube for a few weeks. However, unable to gain weight and facing surgery he had his g-tube placed at a few weeks. Then October 2005, we would start this process again with our youngest child, however, in a much more complex process.

As we started the process once again I thought I was prepared, but discovered quite the opposite. The medical issues we faced with our son and our daughter were vastly different. In addition, our goal was to have the medical supplies out of the house before having another child. This was NOT in the Lord’s plan. His plan was to bless us with our littlest princess long before his medical issues would be resolved. We were to be blessed with two children with feeding tubes at one point, and two children facing multiple surgeries. This time in our lives would test our resolve, inner strength, and teach us that we did indeed have the strength, energy, and would someday become an advocate for another new parent just entering the path we were now following.

Friday, February 3, 2012

Feeding Tube Awareness at OneTrueMedia.com

Feeding Tube Awareness Week is coming up and over the next week I will be posting little posts each day about our journey over nearly the past eight years with two kids with feeding tubes.

While Zach had his tube removed when he was about four Ellie still has her feeding tube and is being used daily right now. Our life has been forever changed due to these vital medical devices. Our children's lives have been greatly improved, and our families perspective has been forever changed.

Throughout the next week more of our story will be told once again in addition to some of the little things we are doing to try and help make the lives of others around us better who are just entering this journey.

Coughing and Rashes...

Well kids are still coughing...Zach was sent home again yesterday from the cough and vomiting. Dr M thinks his cough is causing him to throw up. Good news is Both Celidah and Zach are finally on the med with their coughs.

However, with Ellie she developed a granuloma under her new mic-key button. We started treating the granuloma right away and that has already receded however she now has another rash that is spreading around her buton site. I took her in to see Dr M today and he is thinking she may have a MRSA infection around her stoma site.

The rash she has looks like a bunch of mini-granulomas around her stoma. The first couple days of treating the granuloma we did not notice much of anything then suddenly the rash appeared and has been spreading.

Over the next couple days we have watch to make sure the skin does not become inflamed between the layers, or the bumps become filled with pussy liquid. If either of these happen then we have to take her straight to the ER and let them know we suspect a MRSA infection.

Also Ellie is still mostly using the feeding pump for all her liquids until further notice. We are waiting to see what ENT says about her laryngeal cleft, and pulmonary says about her reoccurring lung infections. Once we have had those appointments we will have a better idea about what is going one and will be able to get a good game plan in place for her.

Tuesday, January 31, 2012

Update on Ellie

We have once again reached a point with Ellie where her cough is just not getting and her poor nose is so goopy that her nose is driving her crazy. The good news is at this point she is not running a fever so she is able to attend school still. However, some of the steps are having to take with her now include wearing her mask outside to try and protect her lungs a bit better from the cold. She is back on all thickened (nectar thick) liquids, and the primary fluid intake is via her feeding pump for now. Ellie is also requiring regular breathing treatments at school so we are looking into whether or not she needs an acapala breathing device for school use as well. Currently she only uses it at home after each xopenex breathing treatment. The question though is whether or not she should also be doing this after her neb treatments at school.

So far academically she doing well in school, however as the winter progresses I am hoping that she does not miss more school. We built into her 504 plan to allow for the additional absences she would require both due to her lungs and for the additional appointments she requires. To help her teachers sends something home for her everyday she misses allowing her to get at least the most important parts of her kindergarten day completed at ho,e to help prevent her from falling behind.