I used to think I had a lot of stuff in my diaper bag. Then Raya got a feeding tube. :) Depending on the type of tube she's had, we've had to pack different things along with us when we leave the house, whether it's going to be for an hour or a week. This includes things like:
Feeding pump & backpack
Medications & syringes (with ice packs if the meds need to be refrigerated)
Bile drainage bags (when she had a GJ tube)
Extra extension tubes
Extra NG or G tube (in case NG/G gets broken or GJ tube comes out/breaks)
Emergency tube replacement kit (included syringe & water for G tube & stethoscope & guide wire for NG tube)
60ml syringes for giving extra water or venting stomach
Extra bag for feeding pump
Burp rags & barf bags (ha ha, that rhymes :)
Gauze & tape for around G/GJ tube
Extra duoderm & tegaderm adhesives for NG tube
Card with information about what to do with Raya if I'm incapacitated
And probably a few other things I'm forgetting :)
I have to say that right now, things are MUCH less complicated than they used to be with Raya's feeding routine. Things have changed constantly with her routine over the past 2 years of tube feeding. Some schedules were absolutely miserable. And I have proof. :)
There are actually 4 of them. And it's almost time for #5. Here's what the inside looks like:
When Raya had her first visit with the GI doctor, I learned very quickly that if I was going to be able to answer all of the questions she would ask at our next appointment, I HAD to write down everything I was doing with Raya. Back then, the days ran together. Heck, even the HOURS ran together and I couldn't remember what I had done 5 minutes ago, let alone what Raya's feeding schedule had been like for the past week and how many times she'd vomited and how much had come out each time.
I had the little notebook with me at the hospital the first time and it has come with me to every appointment & hospitalization since then. Medical providers have chuckled at me for being so meticulous, but even they have to admit that the records I've kept have been helpful along the way. I found out during one hospital stay that if a doctor or nurse came in Raya's room and I wasn't there, they would get my notebook out and read it to see what was new with her. That made ME chuckle because I didn't always just write about medical things. It was medical things laced with sarcasm and opinion. :)
Anyway, sometimes it's good for me to be able to look back at the past and see how yucky our schedule was then compared to now. Because we didn't know what was causing Raya to vomit so much, we tried a LOT of different feeding schedules. At first, she just needed to be fed every 3 hours around the clock, whether it was by bottle or with the feeding pump. I stunk at that one. 8 times in a 24 hour period is HARD, especially when your baby doesn't care if she eats or not so you have to wake up every 3 hours on your own to feed her.
Tube feeds can be administered in different ways. A bolus feed is when the amount being fed is given in a relatively short period of time, usually comparable to how long it would take to eat a meal or drink a bottle. Bolus feeds can be given by pushing the formula in with a syringe, allowing it to flow in with gravity, or with the feeding pump. A continuous feed is given very slowly over an extended period of time by a feeding pump. When the combinations of bolus feed schedules we tried didn't help,we tried a continuous feeding schedule instead.
Our first continuous schedule was 2 feeds that were 10 hours long each. That left 2 hours in between each feed. Only having to feed your kid twice a day sounds lovely, right? The tricky part is that formula is only good for 4 hours at a time at room temperature. At the time, Raya couldn't tolerate anything cold in her stomach so we didn't have a choice but to refill the pump every 4 hours, even overnight. The other tricky part was getting the medications in at the right times. We added & subtracted medications several times during the first year and some of them had to be given a certain amount of time before a feed or couldn't be given within a certain amount of time after one of her other meds.
I think the most miserable feeding schedule we ever had aside from the every 3 hours schedule was when Raya was having bleeding in her stomach from 9 to 11 months of age. Her doctor had put her on an ulcer medication (carafate) to try and heal the source of the bleeding, and in order to do its job, it had to be given on an empty stomach. At the time, she was being fed for at least 20 hours a day. Here's an example of what that schedule was like:
11:00pm- give carafate
11:15pm-start feed #1
11:20pm- give other meds
4:15am- done with #1, turn off pump
5:00am- give carafate
5:15- start feed #2
(7:15- vomit again)
10:15- done with #2, pump off
11:15- start feed #3
noon- give other meds
(1:00pm- vomit again)
4:15pm- done with #3, pump off
5:30pm- start #4
(6:45- vomit again)
10:45pm- done with feed #4
11:15pm- start it all over again
Combine that with taking care of a house and 3 other kids and going to a lot of appointments and you can see why I was a complete zombie for the first year of Raya's life. :) Thank heavens that only lasted for a few months. And during those few months, my mantra was:
"It won't be like this forever!"
I repeated that to myself often, especially during the wee hours of the morning when I was waking up to the "NEE-ner NEE-ner NEE-ner" of the feeding pump beeping or the sounds of Raya puking or the alarm telling me it was time to turn the pump on/off or give meds. I also repeat it to myself when things are going really well. Why? Because it reminds me to appreciate the times when things are going well since I know that it could change at any time. You just never know what might be next with a tube-fed kid. I've been accused of being a pessimist when I've said things like that, but I don't feel like that's pessimistic at all. I feel like it is REAListic and I'm not saying it to be negative, it's just reality and I'm okay with that. :)
Every tube-fed person has different needs that dictate feeding schedules. The type of tube can make a difference too. When Raya had a GJ tube and was being fed into her small intestine instead of her stomach, she had to be on continuous feeds because the intestine can only handle small amounts of formula at a time. She also had to be on continuous feeds for a long time before & for a while after the GJ tube simply because her stomach couldn't handle more than a little bit at a time without causing her pain & discomfort. Now that she can do bolus feeds again, we ALL enjoy the freedom from her little feeding pump backpack.
So these days, Raya's feeding schedule is pretty fabulous. :) Her tube feeds are easier than they've ever been. Can't say the same for oral feeds but that will come eventually. :) Here's what our schedule would look like if I was actually consistent with it:
6:30-7:00am- wakes up and yells "Mommy! I wan dee-out my bed!"
7:00-7:45am- waits for the big kids to leave their cereal or oatmeal unattended so she can steal it and make a mess with it
8:30am- if she wants to eat something, I give her yogurt and depending on the day, she either eats it or paints herself with it
10:00am- give meds
10:30am- start feed #1 (bolus feed with the pump, takes about 20 minutes) & put her in bed for a nap
1:00pm- thanks to the interval setting on the pump, it starts feeding her feed #2 by itself (LOVE the interval setting!)
3:30-4:30pm- has a snack with the big kids after school
5:30ish- sits at the table with us for dinner, sometimes has food, usually has feed #3 during dinner so her brain will associate the feeling of fulness with putting food in her mouth
6:30pm- bedtime, if she hasn't had feed #3 yet, we do it now
9:00ish- if she hasn't eaten enough calories to make up for feed #4, then we give her however much she's short for the day
10:00-10:30pm- meds, during which she almost always wakes up crying & sometimes ends up staying up until 1:30am, as was the case last night. She was throwing a fit and demanding to watch Cake Boss on Netflix.
See, MUCH better than before. Now it's a little bit of tube-feeding mixed in with a little bit of being a 2 year old. :)