4 Years of Tube Feeding

Four years ago I was heading down to the Hospital for Sick Children to attend a class for parents whose children were about to go through the process of having a big hole stamped into their child’s stomach and a tube inserted through it in order to pass nutrients directly into the stomach. There are many reasons why a person would get a feeding tube, for my son it was recommended because of his ‘failure to thrive‘ diagnosis, which basically meant that he wasn’t able to take in enough calories in a day needed to sustain growth and weight gain.

I was so terrified of the idea that this was about to happen, and even worse, it was me that was going to be putting my child through this. The pain of having a hole stamped into his tummy that would never heal. The idea that this was going to be a good thing was so alien to me. How can stamping a hole in my child’s stomach be a good thing? Aren’t parents supposed to be keeping their child safe and making certain that they don’t get big old holes in their body? Encouraging a doctor to do this, well it seemed the opposite of something a good parent would do. But I was assured by all medical professionals that this was a good thing, and I was doing the best thing for my child.
At the same time I was going through training at my still very new job, and I was going to have to take time off in the middle of the class. I knew that this was going to set me back, and make my career as a groomer harder to attain. My managers actually asked me if there was a way to delay this procedure, to have this done on another day. So, for a brief second I had to pause and think which was more important, my job or my child’s health. Like I said, it was a very brief pause, an almost non-existent one, since any parent out there would put their child’s welfare over any job. I believe that the delay that this procedure caused in my training and the proof to my bosses that my child came before the job led to my dismissal in April, the first chance they could get rid of me. But that’s water under the bridge, and if that’s why I lost my job all I have to do is look at my son’s full cheeks, his little chunky belly and know that this was the right thing to do.

Four years ago I was sitting in a classroom with other parents who must have felt just as terrified of this notion as I was. As a parent you want to protect your child. to protect them through pain, and here we were talking about deliberately causing an entire world of hurt to our kids. I was terrified, intimidated so overwhelmed. Terrified because this was surgery and in the pre-anesthesia clinic they stressed that this is major surgery and that a complication of this procedure, or any surgical procedure is death. How can you not start to doubt that this really and truly is a good thing when you have a doctor sitting in front of you, holding your hand and telling you that you need to be aware that while it’s a rare complication but it can happen and you need to be prepared for that?
The cause of my being intimidated should be obvious, but in case you can’t understand let me explain. I had to take a class to teach me how to properly care for the stoma, the whole in my son’s stomach. Signs to watch for that would indicate infection or complications. Granulation, skin forming around the tube is a bad thing, it means that my son’s body is trying to repair the hole and I have to remove that skin, but you can’t just pull it off or scrape it away, it has to be dealt with by soaking in salt water and soaking it. I also had to learn what to do if the tube falls out, how to thread a catheter though the stoma, into my son’s stomach.
It was so overwhelming, learning about all of this, honestly I was freaked out by all the info I was getting and of course on top of all of this, I was worried about my job and falling behind in my training, which I did. You have to admit that if you had to learn all of this, and plan for this procedure, you might feel a little like shutting down as well.

But I managed to get through it. I didn’t let it all get to me, I just rolled with the punches, which I think should probably be engraved on my tombstone “she rolled with the punches” because I honestly feel like that’s what I’m doing on most days.
I got through this. My son not only made it though his procedure but he is doing so amazing now. It’s changed our lives in ways that I never imagined. Being able to give him medication through the tube has made things so much easier when he’s sick and miserable and not wanting to take any medication. We don’t have to fight with him anymore and convince him that the meds will make him feel better. On days when it’s really hot I don’t have to struggle to get enough fluids in him to keep my son hydrated, instead I just give him fluids via his feeding tube and it’s all good. When he’s sick and not interested in eating I can just give him some extra formula and not worry if he’s getting enough nutrients through his supplemental feeding.
As for the granulation forming around his tube, I discovered that the best thing to keep the stoma clean and granulation to a minimum is swimming in chlorinated water, and the stronger the chlorine the better. So when we found a pool that has a very warm tub that has more chlorine than normal and keeps the tube site amazingly clean and granulation free.
As for inserting a catheter into my son’s stomach through the hole in his abdomen, well my son cured me of that about a month after he got his procedure. He thought it would be fun to just yank the tube out of his body. I panicked and called my husband at work and after many frenzied attempts I finally managed to insert the catheter and after I calmed down realized that it wasn’t as hard as I thought it would be. It was mostly the psychological hurdle of shoving a foreign instrument into a wound in my child’s body.
And I have actually had to go through this about 4 or 5 more times since, so I’m an old hand at it. We actually changed the type of feeding tube because my son thinks grabbing hold of his tube and yanking it out of his body is hilarious. The tube he has now does not require us to rush to put a catheter inside him and then rush to the hospital to get another tube inserted. Instead if my son pulls his tube out, we just re-insert it. Simple.
And yet if you had told me that I’d be referring to shoving a tube into my son’s abdomen as ‘simple’ I’d have scoffed at you and said that you were not firing on all cylinders.
But 4 years later and I’m laughing at how dopey I was back then.

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About katastrophes1

Kat is a 20 something girl stuck in a 40 something body. Mom to 3 kids, tormented and amused by 3 crazy dogs. Amateur photographer, self taught crochet junkie. Thinker of crazy thoughts. Where do they come from? Who knows where thoughts occur, they just happen!
This entry was posted in family, Kids, Special Needs, work and tagged . Bookmark the permalink.

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