Remember yesterday how I said I've been insanely busy? Case in point. I started this post on the DAY of her swallow study, and am just now finishing it. I had to change some of the wording because I'd intended to post it the day of her study. At least I have a lot more to write now!
Abby had a swallow study done last Monday to see if she aspirated (inhaled in her lungs) food when she ate. We haven't been able to do a study up until now because she didn't eat enough to be able to do the study. After months of work, she was finally ready!!
A swallow study is basically an xray while she is eating. She sat in a high chair sandwiched between two parts of the xray machine. I fed her barium mixed with baby food, and she drank some barium mixed with yogurt and a Kool-aid packet. The trick is to keep her still and looking right at me during the study so that they can get good pictures, which is no easy task with an 18 month old!
We walked into the room where the study was going to be done, and Abby immediately burst into tears. I was convinced this was it and she wasn't going to do it! We calmed her down with a whirly toy that lit up and made noise, and that entertained her while we got her in a gown and set everything up. After that, she was so hungry that she was very willing to eat! In fact, she signed "more" after we finished and reached for the bowl! Barium: yum... :)
So what were the results? Well, she passed with flying colors! She is now approved to eat purees (baby food, yogurt, smoothies, milkshakes, etc.) and thick liquids (yogurt drinks, Boost/Pediasure, etc.). This is awesome because we can now work toward eating for nutrition...which brings us one HUMONGOUS step closer to getting rid of the gtube!!!
We're now learning how to measure everything she eats and count every calorie. I add butter, heavy whipping cream or cream cheese to everything she eats, and also buy the full-fat yogurt. I document the amount of calories of the food by itself, then write the amount of each "add-on" and the number of calories. For example, 1 ounce of apples is 20 calories by itself. 1/2 tablespoon of butter is 50 (!!!!) calories, and a teaspoon of rice cereal (because the butter makes it too thin) is 10 calories. So that 1 ounce of apples has gone from being 20 calories to 80, just like that! :)
Abby needs to eat 3 meals and 2 snacks a day, which is no easy feat when she is also getting 3 gtube feeds during the day. Each meal is 20 minutes, snacks are 10 minutes, and gtube feeds are 30 minutes. Our feeding schedule is:
8:00 gtube bolus feed
12:00 gtube feed
4:00 gtube feed
6:30 dessert (snack)
She's pretty much eating the entire day, which may sound awesome to most of us, but it is hard for a little girl who hasn't done a whole lot of eating in her life! She is participating in every meal though, which is a very good start. We will work up to the calories she needs, but I'm really proud of her progress so far.
We will be weighing her often because we are hoping that the increase in solids will allow her to gain enough weight to cut one of her feeds. I'm really working hard to make sure she is getting a balanced diet so that GI sees that it is a healthy weight gain and not just from ice cream!!
Thursday, Abby consumed 270 calories by mouth. Friday wasn't as great, but we still managed to get 172 calories in her. Each gtube feed is 120 calories, so I hope she keeps it up! I am documenting everything in huge, organized detail so that I can take it to GI and show them exactly what I gave her, how much she ate, and how many calories she consumed.
This takes a tremendous amount of time and I have been tweaking my system a little each day. I welcome any suggestions to make the documentation a little more manageable! I got a free app that was highly recommended on the feeding tube support group I'm on, but she doesn't mean the minimum weight requirements. It's really a weight-loss app that you can use for weight-gain, but I guess the app makers don't consider 20 lbs 15 oz overweight.
We're very excited about this new challenge, but it certainly is a challenge!!!