Well, the day started with a beautiful sunrise.
Ella has been in a great mood the past few days. She even enjoyed occupational therapy with whipped cream as well as physical therapy yesterday. But last night for her last 2 feeds, she started to complain a lot again. It seemed like a repeat of last week. We went to bed and figured we would see what today brought for us.
Sure enough, by the 2nd feed of the day at 11:40am, she was in lots of pain. Her tummy felt hard and distended. Again, it just seems like it is not emptying. We tried so many things and she was not consolable. The only thing that provided some comfort was holding her. If you tried to lay her down or walk away, she would lose it. It is so hard because it could be so many things. For example, her oxygen requirement has been higher and it appears that her collateral veins are beginning to reappear. If there is increased pressure in her veins from the stints, that could be uncomfortable for her.
It is the worst feeling to have a child that has an ailment. Even more heartbreaking is not knowing what is wrong and then facing the reality that there is nothing you can do to make it better. Ella is so complicated which means that it could be so many things. I feel like we have to review all the clinical symptoms and “do rounds” before Josh and I can come up with our hypothesis and practice medicine.
Once we were 99% sure that food was the culprit (2 hours later), we decided to vent her. Even by this time, her belly was still firm to the touch. Even though we fed her 235ccs at 11:40am, here it was 2:40pm and we easily vented 275ccs without a problem.
Sorry for the picture, but it is a good visual so you can see how much fluid was in her tummy, sitting in there hours after a feed. (The color is just her digestive juices). Once we vented all that food out of her belly, she stopped crying and returned to a more normal state.
We called the pediatrician to get his thoughts. He did not think that increasing the Reglan even further (the medicine we increased last week for gastric emptying) would fix the problem. And he is not comfortable giving more direction until he examines her. Our scheduled appointment was not till February 4th. But at this point, it is tough to feed her. So, he made room in his schedule to see her tomorrow during his lunch break. Now that is a dedicated doctor!
Since Reglan was not the silver bullet, we’re wondering what could be causing her tummy to not empty, even with the higher Reglan dosage. It will be interesting to see what he says tomorrow.
In the meantime, the food pump is back in use. We figured a slow drip of diluted formula will at least keep her hydrated. Sigh…we hate the food pump and it is so much more challenging to use it since Ella moves around so much. She’s always twisting herself around the oxygen cord, but that is not a big deal. With the food pump, if it comes undone, it starts dripping food everywhere (nasty). Or even worse, it can pull out her g-tube. Then you get dripping food plus gastric juices everywhere (even more nasty)! But we are trying out a slow drip for the next several hours and still debating if we want to use it tonight. The last time we tried, we had problems with the g-tube coming dislodged.
So far, the Bun has been doing okay on a slow drip, but as the hours pass by and more gets put into her system, we’ll see how she does. It might be a long night. Please pray for her comfort and for discernment and knowledge for Dr. Perry, who will be trying to figure out the mystery child tomorrow!
