Tube Weaning: Update

It's been a while since I've posted because we've hit status quo.  We reduced Auggie's calories to zero, took the tube out last Sunday and then he got sick.  He developed a high fever and we had no choice but to put the tube back in on Monday.  After 4 days of fever he broke out - Roseola!  So, now he's eating about 75% of what he was doing during his best days and we give him 140ml of formula and 150 of pedialyte at night.  He's drinking less and less very day it seems.  It's very frustrating that we are making no progress with his drinking skills/desire....his speech therapist is back on Monday after a 2 week break due to Auggie's illness, I hope she has some suggestions.  We are giving him avocadoes again as he needs the calories and he LOVES them.  We have not noticed the eczema again so it could have been from the chicken he tried a few days before he had avocado.  His weight is stable at 18 pounds (7% weight loss overall) and he has been pooping regularly which is great. 

Tube Weaning: Day 13

Auggie was really hungry this morning when he woke up - he had a big breakfast and then demanded my bowl and ate my cereal.  He drank 30 ml from his Mr. Juice Bear but then was done for the day (drinking any larger amounts).  He sipped from a juice box for the first time - drinking from a straw seems to be the way to go with him.  He happily ate pretty much everything today but I had to stop giving him avocados when I noticed an eczema rash on his neck and wrists - he has latex sensitivities so he may have issues with avocados and bananas as well - we'll take a break from them for now to see if his skin improves.  Tonight he's just getting some water and tomorrow morning we plan on taking the tube out.....hopefully he'll start drinking more.

Tube Weaning: Day 12

Auggie continues to eat and eat and eat.  He is taking more and more calories by eating his purees, but he is still not drinking very much. However, today he did start drinking neocate splash from his Mr. Juice Bear.  He is getting a little bit of pedialyte tonight and then I think it's time to say goodbye to his tube!!!  It has been an amazing journey....more news to come soon.

Tube Weaning: Day 11

What a different kid we saw today!!  There were no periods of gloominess.  I made sure to feed him every 2 hours and he beat his record. He had lamb for the first time today, plenty of avocado and he consumed almost as many calories by mouth as he has been getting via tube before.  He also beat his old drinking record, taking 2.5 oz. in 10 minutes.  We're seeing a steady increase in his consumption now every day. The key for him now is fluids and protein.  We have to figure out how to get him to drink a protein rich beverage.  Our options are limited due to milk protein allergies but we will try neocate splash tomorrow and if that doesn't work we might have to experiment with soy milk.  Tonight he gets some pedialyte but no formula. Looking forward to tomorrow.  The house is a mess as I spend most of my time preparing food and feeding and washing Auggie. 

Tube Weaning: Day 10

What a day!!!  Today Auggie beat his record from yesterday and had 23 tablespoons of purees throughout the day, but the most amazing thing was when he guzzled 2 oz. of rice cereal drink in 7 minutes!  He only had 20% of his usual calories overnight and then pedialtye to hydrate him.  His hunger slowly built up during the day and breakfast was his smallest meal.  He never got too cranky or gloomy.  Tonight I'm giving him just 70ml of formula and then about 300ml of pedialtye.  Tomorrow we're working on his drinking skills and trying some neocate splash.  The doctor says he doesn't need to drink a "milk" as long as he gets enough protein and calcium from the foods he eats - that's great news, because I don't know what he would be able to drink.  We discovered coconut "yogurt" today - it's packed with calories at 30 per oz and Auggie seems to love it.  Time to get some sleep.....

Tube Weaning: Day 9

Major breakthrough!!!  Auggie devoured half an avocado this afternoon along with several tablespoons of peas, cauliflower and sweet potatoes.  He was glum and distant when he woke up from his afternoon nap and when his speech therapist first came over, but once he started eating he quickly perked up.  We are so proud of the little guy, now we just need to continue with the same volume of solids and get him to take more fluids.  He took 70ml of his rice cereal drink today and several small sips of water and diluted white grape juice.  We're cutting his calories again tonight - he'll get just 20% of his usual amount...we're hopeful that we'll have another good day tomorrow.

Tube Weaning: Day 8

We seem to be on the verge of a breakthrough but it's frustrating for everyone.  Auggie seemed anxious, hungry and a bit frantic today when he was presented with food.  He insisted on grabbing a tangerine from me and then bit into it really hard and made a grunting sound (very caveman like).  He almost took a big chunk out of it.  Again, he was not too interested in taking a spoon from me but he fed himself a few times, ate off my finger and sucked food from his nuk brush.  He took slightly less today from his bottle but more solids than yesterday.  Another new development today was that he started taking small sips of water from his nuby sippy cup.  His calories via tube were reduced by 60% overnight. I gave him some pedialyte during the day to calm him.  He's having good pee diapers so he's staying hydrated even though I'm only giving him 400ml of fluids via his tube.  His speech therapist comes tomorrow so I hope he makes some progress.  He has already lost about 3.5% of his starting weight (we're allowing a weight drop of 10% before we change course).