Thursday, February 9th
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.
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