Sunday, February 9, 2014

Feeding Tube Awareness Week

Today marks the first day of Feeding Tube Awareness Week 2014.  While there are so MANY reasons why people have feeding tubes (and so many different types of tubes), I wanted to begin with David's personal journey about his GTube.

I have to admit, I wasn't familiar at all with what a GTube was until about 8 months before David got his. I knew they existed, but never took the time to understand what they were or, more importantly, why they were used.

David's journey started just over 5 years ago in November of 2008.  He went in for a swallow study (a test where you are given barium to drink then they are able to watch your swallowing on an X-Ray type machine) that we suspected would be bad, but didn't expect it to be AWFUL. He showed silent aspiration (food going into the lungs, or more frequently known as "going down the wrong pipe") on every single consistency of food/liquid we attempted. As humans, we all occasionally aspirate. But most of the time, there is a choking or coughing spell that goes along with that. David had NO sign that was happening to him. This is probably why David was continually ill with pneumonia or other respiratory illness.

The speech therapist that performed the study, immediately pushed us into David getting a feeding tube ASAP. We were scared and weren't ready to jump into major surgery until we figured out if there were other options for David. Our pediatrician was kind enough to go over some other options with us and for the next 7 months we tried different ways to feed David, including pureeing ALL of his meals into a smooth, fine consistency and thickening all liquids until they could be spoon fed to him. Unfortunately, he continued to get sick. Not as much with pneumonia, but other respiratory problems were present.

On July 3, 2009, our pediatrician said she thought we gave it a good effort, but she thought it was time to proceed with a feeding tube placement for David's nutrition. After that, it was a whirlwind of meeting with the surgeon, finding a new GI, and scheduling pre-op appointments. Surgery was scheduled for August 4, 2009.

That day came so quickly. We were so nervous. The surgery lasted for about 4 hours. When he was finished, the surgeon said he did well. She had placed a PEG tube at first (a long tube we had to keep taped down while not in use so it didn't get pulled out) but informed us that he would be getting a "button" 8-12 weeks post-op. 

This surgery was supposed to be fairly uneventful. Of course, that's not how David thought it should go. After a set of collapsed lungs that sent him to the PICU for 2 days and a horrible reaction to the anesthesia, our supposed 2 day stay turned into and 8 day stay. But then we were finally allowed to start our journey at home. At first, I let Michael handle all the ins and outs of the tube. I was horribly intimidated by it. But knowing Michael had to eventually go back to work forced me to jump in and learn the process. What I found was so easy! And I was so relieved to be able to have a safe way to feed my child.

About 4 weeks after the PEG tube placement, Michael was getting David ready for a bath. I was in the kitchen & I was hoping that what I'd heard Michael yell from the bathroom was that David's tooth fell out. I was praying he didn't say tube! But he had. We had been warned that with a new placement, that we only had about an hour before the hole closed up. It was panic mode at our house, grabbing the "button" the hospital sent home with us, finding a neighbor to drop Kyle off too, and heading to the nearest ER. Once there, it was apparent this wasn't something that the ER doctors were very experienced in doing. They tried to keep us waiting FOREVER while we panicked about his nutritional source closing up before our eyes.  After Michael pretty much threatened to place it himself right there in the waiting room did they finally take us seriously.  Using the directions from the Mic-Key button box, the ER doc was able to place the button and then we had to have an X-Ray done with contrast to check to make sure it was place properly. Thankfully, it was.

After all of that. we visited the surgery nurse the next week and received proper training about placement of the button and care for it.  The button needs to be changed out every 3 months at home, and we weren't aware of that.

Fast forward 4 1/2 years later.  Michael and I have become pros at this Gtube thing. We can feed him his formula one handed at this point.  He is able to eat every 3 hours during the day time, through gravity bolus feeds with a syringe.  We change his button with ease in the comfort of our own home. Kyle learned how to change the button himself. He can also feed David, although it's not something he's done frequently.

At times, I wish I had known how easy it would be after those initial few weeks. I think I may have considered it immediately after the swallow study. But I know in my heart, I also would've regretted not trying other feeding methods before the surgery. In the end it all worked. I'm happy to say that David has gone from having respiratory illness every month to much longer stretches between doctor visits. We had to take him in on Christmas Eve and our doctor came in shocked that we hadn't been there since APRIL......longest stretch EVER so far.

While there are some things that aren't so great with the tube (granulation tissue, leakage, etc.) we have figured much of that out & can often combat it at home before things get out of hand.  But the best thing about the tube? 100%- The quality of life it has given to David that I didn't even realize was possible 5 years ago. It makes it all worth it.

1 comment:

  1. I wish hospital staff (especially ER staff) were more educated to all things tubie. The hospital closest to home refuses to even look (literally) at my tube or stoma when I have problems. They tell me that I have to go back to the "surgeon" that put it in at their sister hospital four towns over. Well, it wasn't a "surgeon" that put it in--rather, it was their radiologist. I've had one tube fall out. I knew I couldn't go to the hospital near my home. I went to the hospital three towns over after placing a catheter into the stoma to keep it open. Praise God that a nurse in the ER knew how to place a replacement--or, at least, be willing to read the directions in the box. )