Wednesday, February 8, 2017

Feeding Tube Awareness Week 2017 - Day 3 --- Linus' Story

Feeding Tube Awareness Week 2017 - Day 3

Yesterday I wrote about Charlie Brown's story with his feeding tube. Today I will share Linus'.

Linus's need for a tube shocked us far more than Charlie Brown's. Who would, after all, think they would have two children with this type of issue?

Remember me saying Charlie Brown was born such a calm happy baby, life was good? Linus was 100% the opposite. Oh, he was born calm and happy, but that soon ended. His lactation consultant in the hospital used to say she had a 30 minute break every time she came to our room because he was just a nursing champ, slept well, was just good with being here and doing what he should be doing.

He got his Hep B vaccine and within minutes he was not that baby anymore. He started this horrible cry and didn't stop. Nursing became a battle field to the point we had to move to bottles. He cried all day and all night. We would work for 2 hours to get 20 - 30 minutes of sleep out of him. It had to be a very specific routine or forget it. We begged his pediatrician to help us. His response? "Some kids sleep less". No sir, this is not a 3 hour nap only being 2 1/2 hours or an extra 15 minutes of wake time. This is a child sleeping 4 hours a day total, which means I was getting less and Daddy was only getting a bit more because I would work so hard to keep Linus out of earshot since he had to work.

Then came the reflux, the horrible reflux. The only reflux I have seen that was worse was in a friend of mine son. He would eat, up it came ... and often half way across the room. Almost all of his baby clothes are totally ruined from reflux. There was no saving them for his children.

We moved him to an allergy free formula and thickened it and that helped somewhat, but not totally.

We finally moved to baby food and the reflux got a bit better, though the crying never stopped. It was nearly constant. If he was awake, he was crying. ECI said they had never seen anything like it. I couldn't leave the room, even if he could hear me. No one could hold him except me, even from his first week of life. No one! Not even Daddy. ECI worked to try and help him overcome this. They failed. Oh, they tried hard, but they had never seen a kid like this. We started with private therapy and they almost gave up on him but I was insistent. We had to help him. He couldn't crawl, roll over, or anything because he couldn't be out of my arms (even Daddy's arms were better than the floor to him, and that's saying something).

Once we got his therapy semi-successful, he blossomed with his milestones. There was no physical reason he couldn't do them, it was whatever this crying was that stopped him.

Eventually crying moved to just a horrible disposition in a toddler, than a preschooler, then ... well you get it. We would have hour long meltdowns out of nowhere many, many times a day and there was no way to stop them.

During this time brother got his feeding tube and life was trucking along, or so I thought. We began to notice Linus had slowed down his eating. I wasn't the first to notice it this time, and I was in a lot of denial with him doing it. My husband told me, finally, ignoring it wasn't going to help so let's face it. We tried even harder with him, and I had some new tricks up my sleeves. But, we figured out much faster with him what was going on and went to the GI. That's when genetic component started being tossed around with our doctors. Thankfully our GI tried a few things and then said, "we are stopping, time to put in a feeding tube before he gets as sick as Charlie Brown was when he finally got one."

His surgery did not go as well as Charlie Brown's. Our wonderful surgeon had retired and the new guys didn't like a GI helping with surgery, they wanted to do it their way and alone. So we didn't get the same procedure. Also, the hospital had a great new idea (said sarcastically). Go home 24 hours after surgery no matter what. He went home in a lot of pain and hadn't even had a feed with his tube yet. Horrible.

But, since then we have had success with his tube feedings. His need for control and his meltdowns have made it far more interesting, but they are working for him very well.

Side note: Some of you know about the heart scare we had a year ago (or so) with him and know that, because of that heart scare we know a huge component of why he has these nasty meltdowns (a few of you have witnessed them and realized how he smiles one second and is hysterical the next and you can't do anything to stop it nor did you do anything to start it). For those who don't, it's food. Yep. He has a very odd reaction to many foods on the market. Everything from dyes, to salicylates (that means apples send him raging), to preservatives. Label reading doesn't help because in our nation you are allowed to hide things and not put them on the label. (why?) But I will get into that story at another time.  


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