Ella completed her first round of food tests with flying colors. After each feed, she was happy and crawling around the crib within minutes. We take this to mean that she is not experiencing any pain or discomfort.

With it being Saturday, the staff changed and that created a bit of a kink in the forward movement of things. The nurse was not sure if the doctors wanted her to have the morning dose of MiraLAX. I wasn’t sure either, so we skipped it. When they did rounds, it was decided that they wanted another set of abdominal xrays. They wanted to see if her colon was still full. The results of the xrays did show that the lower portion that was full the other day had emptied. However, it did show that the upper portion of her colon was full and also contained some air pockets. From here, they determined that she does need a motility aid like MiraLAX and recommends that we have her on some amount of it each day. For now, they are going to try 2x/day, to see if that is the sweet spot. If you remember, she took it 3x yesterday and her stool was too loose.

So, we gave the first dose of MiraLAX at 12:30pm. By the time 6pm rolled around, still no stool. I’ve heard Ella passing gas here and there, but no stool up to this point.

At 3:30pm, we started our new food plan (the one we want to use for the coming days). We gave her 200ml of Nutren Jr with Fiber plus 75mls of water. She took it without issue. This really tells us a lot. First of all, she has not tolerated that type of bolus volume before today. Even in the past, like last summer, we tried to combine feeds at the time and increase to this type of volume per feed, and ran into issues. She would complain and show signs of pain. At the time, we just thought it was gastric emptying and re-initiated her Reglan medicine. In retrospect, her bowels have likely been slower than normal this entire time and could have used a motility aid. I guess having a complete backup experience just made it come to light.

And I have never connected the feeding discomfort with a major increase in oxygen. Right now, she is sitting in her bed watching a video on .5 liter (we were on 1.5 liters when we were admitted last Tuesday). That is amazing!

We’ve been blessed this round. Although we have spent several days in the hospital, we arrived thinking she might have to undergo major surgery plus her oxygen requirement was so high that we were convinced she might be having issues with the stents. Thankfully, neither occurred. Plus, we have been able to transition to a different food and uncovered a symptom that has likely been causing some discomfort for quite some time.

I just fed her at 9:30pm – it was the third feed of the new food plan with Nutren Jr with Fiber. I’m happy to report that she has tolerated the bolus feeds with the new food like a champ. No complaining at all. Plus, about 9:45pm, I discovered poop! I was never so elated to change a poopy diaper. This means that since her bowels are functioning and she has tolerated the new food, there is a good chance that we might be able to go home later tomorrow.

We’re hoping for a restful night’s sleep with 2 more successful feeds at 9am and 12 noon. From there, it will be interesting to hear if they want to keep us or let us go home.