We’re home tonight with Ella.
We have good news and more good news. The good news is that they figured out what was wrong. The even better news: it does not require surgery. In a nutshell, her gastric emptying and overall motility in her bowels is too slow.
As soon as the 3.5 hour test started, I looked on the screen and noted that her stomach was not emptying like I’ve seen it do before during prior upper GI tests. Even after 20 minutes, only a small trickle of the contrast liquid had left her tummy. After 2.5 hours of the test, one third of the contrast liquid was still in her stomach.
So the other day when I fed her a larger amount of food, her tummy accepted it without a problem. But as soon as I did that same larger volume a couple of other times (and since her tummy was not emptying properly), it became painful for her.
When the radiologist started discussing the slow gastric emptying, a light bulb went on for me. The medicine that we discontinued in mid-May was Reglan. That medicine is given specifically for this issue. She had been on Reglan since her early NICU days. It’s been weight-adjusted over time. It is one of those medicines that there is not a specific time frame for how long kids should use it. And the only way to truly know if it should be discontinued is to try. Well, we tried and it didn’t seem like she had any problems.
The past 6 weeks have been interesting with feeds. When she would see the syringe and food coming, she would whine a bit like she wasn’t looking forward to it. Since she had no other symptoms or side effects, we assumed that it was her just being a 2 year old. Now we think that maybe she was experiencing some discomfort, but not enough for her to make a big deal out of it. However when I tried to condense her food the other day to four times per day versus five times per day, she let us know that she was in a lot of pain.
We knew that something wasn’t right. And we see this as a blessing in disguise. She has probably been experiencing some discomfort with feedings for awhile now. And we were going to look to condense her feeding times at some point – it was just a matter of time. Now that we discovered that Reglan was still helping her significantly, we can likely accomplish moving towards our goal of feeding 3 times per day over the next several weeks. Plus, Ella won’t be experiencing any discomfort.
We’re just so thankful that it was not anything major that required surgical intervention. Praise God!
We’re all happy to be sleeping in our beds tonight. Ella went to bed early – she was very tired from the lack of sleep over the past 36 hours. We’ve already given her the first dose of Reglan and her first bolus feed at home and hope that things will just get better from here.