Here is a high level outline of what our days look like:
9:00am - Annabelle is required to drink 4oz between 6am and 9am. If she doesn't drink 4oz, it must be delivered thru the tube as a bolus. The feeding needs to take place BY 9am, meaning 8:30a the feed should begin if it's going to require to be bolus-ed.
9:30am - 11am - Nap. When she wakes up, quickly encourage her to drink the required 4oz.
Noon - 4oz needs to be met or delivered as a bolus.
1:00pm - 2:30pm - Nap. When she wakes up, quickly encourage her to drink the required 4oz.
3:00pm - 4oz needs to be met or delivered as a bolus.
6:00pm - 4oz needs to be met or delivered as a bolus. Absolutely no feeds after 6pm, beside dinner / juice / water if she wants on her own.
Give Omeprazole and flush tubes.
**This completes the days requirement of 16oz x day.
7:30pm - Bathtime. Bedtime.
8:00pm - Begin nighttime feed. The goal is to start the feed after she is already asleep, fingers are crossed she falls asleep by 8pm when the feed needs to begin.
Feed rate begins at 20ml x hour.
9:00pm - Adjust Feed Rate to 30ml x hour
10:00pm - Adjust Feed Rate to 40ml x hour
11:00pm - Adjust Feed Rate to 50ml x hour
12:00am - Adjust Feed Rate to 60ml x hour
1:00am - Make a fresh batch of formula and change her bag. Continue feed at 60ml x hour.
Sleep.
6:00am - End nighttime feed. Shut down pump. Disconnect tubing from Annabelle. Give Omeprazole and flush tubes.
**This completes the continuous nighttime feed and meets the requirement of 20oz x night.
Last night for example was a new curve ball. When AK went upstairs to wake Annabelle and disconnect her tubing - he realized that at some point she pulled the tube out on her own. The pump continued to work and instead of giving Annabelle everything she needed all night, it pumped her mattress with the formula instead. We have absolutely no way of knowing whether or not she pulled the tube after 1a or 5min before AK walked in the door.. meaning I don't know if she received her full nighttime feeding or not! Oh the frustration!
Do I need to put the tube back in? Of course I do! Can I? Of course I can! ... but not without a tube. Here's the catch - our insurance company will only pay for us to receive 1 NG Tube x week, regardless if she pulls it out or not. I can't place the tube once it's already been used. This morning she is Tubie-Free. We get our first shipment of Medical Supply today and hopefully our new tube will arrive and I can place it before she needs a bolus feed. That means I am praying to all the God's she takes all her feedings orally until the tube arrives via UPS. Otherwise A: she won't be meeting her feed. B: I'll be taking her down the road to the local hospital and having them place the tube using one of theirs. I've called the insurance company and they will not budge on the amount of tubes they will provide us. I'm not happy. I tried to explain, "I am taping this tube as much as I possibly can, but she is TWO years old! The tape doesn't hold worth a crap .. the tube moves if she breaths, coughs or sneezes - I understand how it falls out so easily." It's also not weighted which means it's more likely to coil up around her stomach and able to come back up vs a weighted tube that will sit a the bottom of her tummy like an anchor and not move around so much. Insurance of course won't shell out for a weighted tube. Tis' the constant battle of my life!!
Thoughts that cross my mind daily:
-We will never sleep again.
-I will likely be wearing vomit / stomach bile on a daily basis for the rest of my life.
-If laundry was a burden before, I had no clue how lucky we were until now!
-We'll be broke forever.
-Our castle just got 50x smaller. We need storage to host all this stuff and have completely run out of space!
-We will NEVER sleep again.
-I hate insurance companies.
-Hurry up Johns Hopkins, we need answers soon!
Newly added items to the ever growing list of things we are learning to invest in:
-Mattress protectors.. a lot of them
-Extra sheets.. Annabelle (both girls) are spoiled rotten and have grown accustomed to only wanting to sleep on the softest of soft sheets.. I take the blame in spoiling them as babies.. now it's biting me in the butt.
-Insulated Feeding Bag so we don't have to change her bag at 1am each night.
-Syringe Rolls / Storage for all the syringes we have to travel with. (1 for medication. 1 for checking stomach contents. 1 for flushing tube before and after medication / before and after a feed).
-A smart bag of some sort to organize and travel with all these accessories needed to feed my kiddo when I have to actually leave the house.
I would be pulling my hair out! Its so much! I remember doing tube feedings witb the little boy from my old child care center I worked at! The tube ALWAYS kinked. If he moved the wrong way it kinked. Very frustrating. The bag she has looks a lot bigger thab the one he had though and I know he had a small backback that fit him perfectly that was made just for his tube. I wonder why they are so different....maybe because his was a G-tube but when he had the NG-tube I feel like it was the same pump/bags. Good luck! Praying for yall!
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