Sunday, February 10, 2013

What Feeding Tube Awareness Week means to me

It's funny how life works. Just last night as I was giving Kenny his cocktail of meds before bed, I remembered that today was the first day of Feeding Tube Awareness Week. Yeah, us mommies of special needs kids cling onto all awareness days, weeks and months because it makes us feel that what we are going through...we aren't going through it alone. Anyhow...I was squeezing his meds through the extention that you hook up to the button on his stomach and I got a face and body full of all that I tried to put in. Here, he had a blockage. Great! There are three things I dread most in the world...puke, changing the frog tank when it gets green and slimy, and having to change a g-tube button. Especially after last summer when I thought I was a seasoned button changer...and as I was putting in the new one, his hole closed we had to go to the hospital to get it reinserted. Let me tell you, this kid is tough because they had to literally stretch his tube opening and really push it in there.
So you see how I dread this blockage/changing a tube not for the faint of heart. I grabbed the new tube packet and thought to myself, "I can do this, I can do this". Syringes the balloon saline it's ready to be pulled out. Nah....nope. Couldn't do it. I totally chickened out. I added new saline to the balloon and figured that I was going to work that blockage out. I suctioned and added warm water...for god knows how long but me with my Italian stubbornness, I got the blockage out! Whew...I got another few weeks of relaxation time before his button needs replacing...I think I'll let the doctor do it.
So as I was saying, this is the start of Feeding Tube Awareness Week. It's to...well...raise awareness. To educate people that feeding tubes are to help. Before Kenny, I had no idea what a tube feed was...the thought of putting a hole in my sons belly and supplement his feeding was catastrophic. I felt guilty that I wasn't doing my job as a mom. He wasn't eating for me and I couldn't comprehend how he went from kinda eating a half jar of stage 2 baby food to not even wanting that. How even a spaghetti O would make him gag and throw up. Why wouldn't my on eat. We were in feeding clinics, occupational therapy and still...age 2...he couldn't chew or swallow without gaging and vomiting. It was finally time...after months of putting off the feeding tube talk, his doctors felt that for his brain to grow and for him to finally start thriving, he needed a tube. They also told me that this was very common in micro preemies. I did everything I could to try to feed him and I was getting upset and wold cry every time I tried to feed him. So The summer of 2010, my son went into surgery for his life saving feeding tube. I was scared to death. It was yet another first that Tony, I and our families have experienced with Kenny in our lives. Thank goodness I had some good friends online who's children had feeding tubes. It has been difficult at times...those nighttime feeds still suck rocks, but the weight has been lifted off my shoulders. He has gained weight and this year has been the first fall/winter that he has not landed in the hospital. I have gotten much support from Facebook and the friends online. Learned tricks of the trade, dos and donts, and felt that we are not alone. We are hoping that one day he will eat enough to be rid of the tube, but in the mean time extremely grateful that we have been blessed with our special needs child and all that he has exposed us to.

Tuesday, February 5, 2013

At five in a half...and all is going well!

Finally a doctor appointment for Kenny where he's doing good!!!
He hasn't gained any weight, even with the tube feeds and eating more and more...but we're working on that.
His coloring has gotten much better than that yellow hue he had...which i have cut out all of his baby food. He is only eating the foods we eat. I cut everything up small and bite size for him. hes been enjoying spaghetti/pasta, hot dogs, pudding, dry cereal, mashed potatoes and he even has actually tried a Popsicle!!! Four months ago, he wouldn't even attempt to try something cold! he has helped me bake a cake with Gina...and loved being part of doing something hands on. He has been interactive playing more and more with his sisters and brother too. I am so relieved! Yay for Kenny. Man is he a lot of work..all the tube feeds, feeding him (like a 9 month old because he just can't quite figure out the spoon/fork to mouth thing yet), diaper changes, medicines, and everything else, but it's finally starting to pay off! He has not had a hospital stay for a serious sickness since the summer...and THAT is a small miracle in itself
He does have to see his neurologist for some questionable issues (jerky movements at night, fists curling inwards, eye crossing inward and some clumsiness, but we will worry about that road when we cross it. Today I am just very thankful that he is doing well!