Monday, July 27, 2015

NG Tube Changes

Before Ezra left the hospital for the first time when he was a month old, Nate & I had to learn how to manage his feeding tube. I picked it up quickly and I've done all but one of his tube changes since, even when he has been back in the hospital. In the beginning, I was told it needed to be changed weekly. However, there are tons of different opinions on that subject. Weekly, every other week, monthly. Different people have different opinions.
Eventually, I just started changing it when the tape was starting to bother his skin & it we needed to switch cheeks. That has worked out very well for us, especially as Ezra has gotten older. When he was a newborn, I could literally change the thing out without even waking him up. Now, it's a big ordeal that entails his feelings getting hurt and me betraying him followed by at least an hour of tears. I don't blame him, I'd hate it too.
the aftermath
grudge holding
still mad
Anyways, I thought I'd do a post dedicated to how I change out Ezra's tube. I'm not claiming it's perfect or the best way ever, but it's what works very well for us. I wish I had been able to find more than the handful of blog posts by parents on this subject, because I feel that parent experiences can be a lot more helpful than just the instructions you get from doctors or nurses.

*Before I begin I just wanna emphasize a few things. First: I'm not a doctor, or nurse, or anything special. Just a mom whose done her fair share of tube changes. Second: Ezra is a 5 month old. Everything I do is what works for a baby, specifically my baby. Different kids of different ages, personalities, and needs will need different methods. This is just what works for us.

1. Removal of the tube.

post tube-less bath
My favorite part. It's easy, Ezra is happy, and I get to see his face tubeless.
Ezra is on bolus feeds. For him, this means he gets fed every three hours beginning at 6am, seven times a day. That's great because it means he can go a few hours tubeless, which he loves. (Side note: It's literally the best time for a bath, no tape to get wet and soggy.)

*If your child is on a continuous feed, you would need to check with his or her doctor before removing the tube for an extended period of time. If it is a possibility, take advantage of it! And take lots of pictures of your kiddo's cute face. :)

2. Preparing supplies for tube placement.

I always get all the supplies I'll need ready before anything else. 
Our supply list for a tube change is as follows:
  1. 1 piece of foam(?) (We have Mepilex transfer with safetac in 6x8in sheets. We got if from the hospital). I cut it 1.5-2 inches long and just a little wider than the ng tube, probably not even a cm wide. Since using this, Ezra has had way less problems with skin irritation. 
  2. 3 pieces of hypafix/medipore or something similar. Nexcare makes micropore, which also works pretty well and it can be found at pharmacies (super plus). The first piece is slightly longer and wider than the foam, the second is usually about a 1/2 inch long and an inch wide, and the third is about 2 inches long and an inch wide.
  3. 1 piece of tegaderm or something similar. We get the super tiny ones & need about half of it. We like it to be just bigger than the first piece of hypafix. We like as little of it to touch his skin as possible to minimize skin irritation.
  4. 1 new ng tube, already out of the wrapper 
  5. Lubricant. We get small packets, but good ol' KY will work just as well.
  6. A fine point permanent marker.
  7. Pacifier. Ezra loves his paci, and that helps a ton, more on that later.
  8. Swaddle blanket.
  9. Pillow.
  10. 10 mL syringe for checking placement.
  11. Stethoscope, also for checking placement.
I lay out all of my supplies and have everything ready to go so that I'm not cutting tape or searching for the tube at the last minute. Trust me, been there AND done that. It makes everything even less fun than it already has to be.

Also, this probably seems like a lot of tape. Why do I need so much tape? Why All the different types? Can't I just use one piece?
I could use one piece. Osome random type of tape.
But in my experience, this happens (see photo to the left). And that sucks.

3. Preparing Ezra for tube placement.

Before everything, if it's time for him to eat I'll usually see if he wants to take anything from his bottle. If he does, that's a huge plus because it makes checking for placement a lot easier.
  1. Measure & mark the tube. This is what the marker is for. Using the tube (the end that goes in his stomach) I measure from the bottom of his ear, to the bottom of his nose and then to right between the bottom of his sternum and his belly button. I mark that spot on the tube. That mark is where the tube stops being fed in and it should be right at the edge of his nose when placed. 
  2. Next I swaddle him, give him his paci, and position him on the pillow so that his head is slightly tilted back. He usually is super calm at this point.
  3. Put the foam on his cheek. I place it about an inch away from his nose and along an imaginary line that runs from the bottom of his nose to the bottom of his ear... If that makes sense.
4. Placing the tube.
  1. Place the tube. Dip the tube in lubricant, which makes it go in easier. With the tube pointed down towards his throat, I feed it into his nose and keep going until the mark I made on the tube is at the edge of his nostril. Whether or not I succeed on the first try is generally dependent on whether or not he is calm and actively sucking. If he's crying, he's not sucking, and if he's not sucking, he's not actively swallowing. All of that makes it difficult for the tube to get past his mouth and it will usually come out of his mouth. Not fun. 
  2. Tape it down. Start with the long piece of hypafix. Lay the tube over the foam and then place the hypafix over that. Next, layer the tegaderm over that. All that's left now is reinforcing with the last two pieces of tape. I put the smaller piece right by his nose and the other one tapes the tube down under his ear. These prevent him from grabbing and yanking on the tube.
After that Ezra usually cries for a while and I just hold him til he falls asleep. It can be rough, which is why I try to only change it when I absolutely need to.

5. Checking placement. 

There are two ways to do this. The first is what I usually do. If Ezra has just eaten, he'll have milk in his belly. So I just attach the syringe to the end of the tube and draw back until I see milk. This, to me, is the most reassuring way to check, I know there isn't milk in his lungs. 
If he hasn't eaten, the first method won't work. So I'll do it the second way. Draw back on the syringe so there's about 5 mLs of air. Attach to the tube and then use the stethoscope to listen for the air in his stomach as you quickly push it in. You hear a sort of 'swoosh' sound. If you hear it in his belly, it should be in the right place. 

*A note about checking placement: 
I usually don't check right after I place it, because if it was really in his lungs, I'd imagine he would be coughing and I would know. I'm just always pretty confident that it's in the right spot, which is why I tape it down completely before I even check. However, I always check for placement before feeding him through the tube if I have just changed it out. You can never be too safe. 

Anyways, that's what a tube change entails for Ezra. We can't wait to be done with ng tubes. *sigh*

I wrote this post a month or two ago, with the intention of adding more pictures. We ended up trying to just remove the NG tube and see how Ezra did. He didn't do well (at all). So we opted to finally go with a gtube/ button. He had that placed almost a moth ago, so unfortunately I don't have any more pictures to add for ng changes. I ***might*** have some, I'll have to check and update this later.

Saturday, May 23, 2015

Starting Solids

For the past month or so, Ezra has been showing interest in food. I've let him taste avocado & banana so far but he wasn't really excited about eating.
Yesterday, he had an appointment with OT & we tried feeding him avocado with breastmilk. He was obsessed. Like trying to grab the food and lunging at the spoon obsessed. It was great.

So today was day two of solids. He's still loving it. I made a batch and stored it in small plastic containers, I think there's about 6 with two teaspoons each. Here he is today:

The next foods we'll be trying are carrots or parsnips, depending on which I find. I've got a whole list of what we'll try after that. I can't wait to see how he reacts to different foods. :)


You'll notice he has no ng tube...
look at that face. ugh I love him.
It was out when we woke up yesterday morning, I replaced it to feed him, and then he threw it up. He eats more by mouth when the tube is out, but not quite enough. The spikes on the following charts are days with the tube out:
Unfortunately, he still only eats about 30% of his total volume, which is no where near enough.
Anyways, I'll probably replace the tube at some point today. I'm working on a post about our ng placement routine. I'm excited about it because I only found a few posts about it when Ezra first came home with tube, and they were way more helpful than the majority of the things I learned from nurses/doctors about tube placement.

Thanks for reading!

Monday, May 18, 2015

An Introduction to Ezra

Hi! I'm excited to start this blog. It'll be a good way for me to document Ezra's life, health, challenges, and what not. Maybe even help out families with similar circumstances! I wish I would have done this sooner.

Ezra is 5 months old and was diagnosed with Tetralogy of Fallot with Pulmonary Atresia at birth. He's gotten the majority of his food via an ng tube since he was only a few days old. He was born weighing a healthy 9lbs 2oz, so his weight has never been a problem. However, he has never been able to be off of the ng tube.

Here he is at about a month old & now:

Although Ezra hasn't been able to take full feeds, he has always been able to eat very small amounts fairly well. He's eaten anything from 5 mLs to 105 mLs with his average being 20 mLs to an ounce. 

We always thought that after his open heart surgery he'd have more energy and feel better, allowing him to eat completely on his own. Unfortunately, the surgery came (April 8, 2015) and went with very little change in his feeding habits. 

More recently, his feeding has gotten even worse, which can attributed to the fact that he is becoming more and more aware of his ng tube. He hates it, and it's worsening his oral aversion. 

He now goes to weekly feeding therapy, which isn't super helpful because the therapists think he's too old to relearn how to take full feeds. I don't believe that, and I refuse to give up trying.  He will also be getting a g-tube in the near future. I'm sad about that because it just seems more permanent and serious.. But I know that it's what he needs & it will be good for him.

I'll try to update this blog weekly, maybe more often if he has any appointments of notable things going on. Thanks for reading! :)