Under the supervision of Braska’s nutritionist, we are attempting a 3-day wean from nutritive support via her g-tube. This DOES NOT mean we are ready to be done with the tube, not by a long shot. But it does mean that she has made some very good progress.
I’m going to document some here because I know some of you are in a similar boat with feeding issues and tube feeding. If you have any questions, let me know.
We started this morning, and the key changes to how life will go for three days are these…
- Braska gets nothing in her tube except a 50/50 mix of water and Pedialyte. Nothing of actual nutrition. Just fluid support.
- It’s all on me to be sure our schedule is open enough to allow for time to sit at the table and work on as much oral intake as possible. We get one shot at a wean as authorized by the school district via her IEP. No pressure.
- We will be tracking every single mL and calorie that she takes in, and the nutritionist sees her each day for weight check and to tally calories to be sure we’re safely providing what she needs.
- Her schedule requires us to be putting something in her, via tube for fluids or orally for nutrition (purees/mashed meals, etc), about every 2 to 2 1/2 hours. Hence the schedule openness being important.
I would have liked to arrange this for a Friday, Saturday, Sunday so as not to have to coordinate with a school day, but that’s ok. We made it work today, even though it meant meeting the nutritionist at the school for her first weight check and to make sure we were all on the same page. Then I returned an hour later to give her the mid-morning fluids before her snack at school. (They don’t give her any tube feedings at school, just not necessary to do, so it was easier for me to go do it for the one time it’s needed instead of prepping someone on how to do it for one bolus feed. It took all of 2 minutes. 5 oz. LOVE that g-tube sometimes. So efficient.) Now I go back in about 30 mins to pick her up. Glad that’s just one day, though.
Here’s how her schedule looks…this is fluid intake, which is supposed to be between 30 and 37 oz each day. Which is A LOT more than she usually takes, and more than KiKi has either. So we’ll be going through diapers like crazy, I’m betting. (They warned me not to worry about our pseudo potty training during this wean time.) We’ve set it up to hit the 30 oz mark… these are all fluid amounts to be given at each time, remember. Along with whatever oral food she’s taking. These amounts can be given by mouth or by tube, but she takes very little by mouth in terms of fluids.
7 am—30 mins before breakfast—3 oz
730 am—Breakfast—2 oz
10 am—mid morning snack—5 oz
12 n—30 mins before lunch—3 oz
1230 pm—Lunch—2 oz
330 pm—mid afternoon snack—5 oz
500 pm—30 mins before dinner—3 oz
530 pm—Dinner—2 oz
830 pm—Bedtime—5 oz
So far, she had 5 oz before breakfast by tube, then she ate 4 oz yogurt for breakfast and I managed to get 2 oz of milk in by mouth over about 40 minutes of really pushing her. But she did it. Then I gave her 5 oz at her mid morning time and she was getting ready to have her applesauce snack at school, which she likes to finish, so 4 oz there.
We’ll see… the nutritionist will be back tomorrow mid day, and I’ll scan and email her the daily log list tonight. I am glad Braska’s to the point we can do this and see how much she will take in, but at the same time, it’s scary to think about having to keep a schedule like this all the time if she’s going to be “downgraded” on her tube, meaning that she would be classified as needing her tube for like 50% nutrition instead of 90% nutrition, or something like that.
At her weight check this morning, she was 22 lbs 15 oz. She was also 35 1/4 inches. The little muffin is 4 years old! She had been up slightly over 25 lbs for a short while at her record high weight, but being “belly sick” for about 10 days over the holiday cost her well over a pound, and almost 2. She had lost a little before the ickies when she had been doing better on oral intake. It’s really hard to get her enough calories in foods that can be properly mashed/blended to a texture she can handle. So we’ll be watching her very closely.
Here’s hoping I can maintain my sanity, remember the rules and watch the clock. Oh yeah, and not forget that I’ve also got another child and a husband (and a dog) that occasionally need to be tended to as well.