The Fabulous Life of...

a tube feeder.

Today's topic: what is a typical day like.

Well, we are still adjusting to life with a tube. This is our typical day:

0730- Time to rise and shine for school! Hayden's night feed is usually still running. He takes his pole to the bathroom to brush his teeth and back to his room to get dressed.
0800-By this point, we are downstairs. Usually, there is about 100-200ml of formula left in his bag. I stop his pump, clamp his tube, and give him a flush of about 60ml. This goes towards his daily total of water. I add his daytime total feed to his bag. I load his bag, pump and tubing into a backpack to get ready for school.
0810- Hayden is on the bus and off to school.

Hayden gets a total of 1475ml of formula a day. Hayden can only handle a rate of 100ml/hr during the day, though, and 65ml/hr at night. Do the math. He's on his pump for about 16hrs a day. Now, of that 16hrs, about 9 of those are while he's sleeping. While he's at school, his bag is either on his shoulders or hanging off his chair. The pump only weighs about 1.5oz so it's really light. He doesn't even notices it most of the time. Periodically, during the day, the school nurse checks on him to make sure everything is still pumping and ok.

1550- Hayden gets off the bus. He's usually still pumping.
1625- His daytime feed finishes. I turn his pump off, clamp the tube, unplug him and flush him again with 60mls. At this time, I have to do his post op tube care. For him, this means spraying a soapy water solution on his belly. This not only provides antiseptic, it loosens and softens any build up or crust. I use clean q-tips to softly remove these. I, then, use gauze to dry everything. Once that's done, I rotate the whole tube and reapply tape. I also put a bit of neosporin on him. He gets the remainder of the evening off the pump.
2000- bedtime! I give him one more quick look over to make sure his tape is good and that no build up has come back, give him his meds, and he's off to bed.
22-2300- Whenever I go to bed, I take his night feed up. I take a clean bag, add a 4ft extension and pour in approx 720ml for night time. I take his pump and feed upstairs. Once in his room, the bag gets hung on the pole, the pump attached to the pole and it's plugged into him. I lower his rate to 65ml/hr and he's good to go. Now, if he rolls onto the tubing, we get alarms through the night saying NO FLOW OUT. We have to go in and roll him over and find the kink. Most nights, we get no alarms. Some nights, we get 6+ alarms. Other nights, he comes unplugged and we "feed the bed." This means that the feed went into the bed instead of the kid. This makes for a nasty mess. Not only is the bed full of milk, since there's nothing plugged in or clamping the tube, there's nothing to stop the stomach contents from coming out. So, yeah, I wake up to the smell of sickly sweet vanilla and stomach acid. Bleh! Thankfully, this has only happened once. It's amazing how fast stomach acid can flow out of that sucker. lol. It's like an open hydrant.

Now that we are settling into a routine, it's not that bad. Hayden definitely feels better about mealtimes because there's no stress or pressure. Now that we know that a) he wasn't eating due to slow motility, a very small stomach and reflux and b) he's getting his calories no matter what, there's no stress for us at meal times.

Feeding Tube Awareness Week

This week in February is National Feeding Tube Awareness(FTA) Week. As from the title, the purpose is to raise awareness not only to the devices themselves but to the kids and adults who have to use them for various reasons. Also, FTA is to debunk myths and misunderstanding about tube feeding. Everyday this week, I will write about something about tubes. If you have a question, please feel free to ask.


Today's Topic: Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding. 

As many of you know, Hayden just got his G tube a few weeks ago. Hayden got a tube for several reasons. Hayden has documented oral difficulties due to his low muscle tone. His jaw muscles are weak and tire easily. His throat muscles are still weak and can be uncoordinated. This makes the simple act of chewing exhausting for Hayden. He has to put a lot of effort into simply taking a bite, chewing and swallowing. He simply doesn't take in enough on his own to grow. This has caused him to fall down the charts. He's currently at about 15% for weight and about 23% for height. That is a huge drop from his 95/75% that he used to be. He has been slowly going down over the past few years. He also has problems staying hydrated since he doesn't drink enough fluids. Since Hayden got his tube, we have learned a lot that answers the questions on why he wouldn't eat. It appears that he has a very small stomach and can't handle volume. We can't get him above 100ml/hr without him becoming painfully bloated and distended and stomach contents pouring out around the tube. He also seems to have been refluxing all this time. Now, we feed him under 100ml/hr and added Prevacid back to his meds and it's made a huge difference. Hayden loves his tube. He still eats at the table for Breakfast, lunch and dinner. While we definitely have days where it's not perfect and it definitely is a lot of work for us as parents, we all feel like this was a great decision for him. 

Tomorrow will be another topic. :)