Wow, today simply felt like a long day.
Ella slept really well last night. She went to sleep at 6pm and truly did not wake up until this morning at 7am. Of course, she was restless several times throughout the night when she would realize that her binky was not positioned just right, but I am surprised that she wanted to sleep that long. Tonight might be the same way, since she has been asleep since 6pm too. She had a long day and is worn out.
We were driving at 8:10am this morning towards the hospital to visit the Radiology Department for Ella’s test when my cell phone rang. It was the nurse at Dr. Sarantos’s office letting me know that the hospital could not fit Ella into the radiology department until 10am. At that point, we were half way to the hospital. Also, we were having internet connectivity problems at the apartment and at least the hospital has free wifi, so we kept driving.
Once we arrived, we went to grab coffee and muffins. As soon as he was finished inhaling, Josh put on headphones and started working. He has still been pushing hard to make sure that his project for work is completed.
Our appointment was at 10am but 40 minutes later I felt prompted to ask for a status on the appointment. I was informed that since they were just “fitting her in” to the schedule today, that I needed to be more patient.
Finally at 10:50am, we went back for the initial procedure. They took dye and injected it into her g-tube while we watched it on the screen. They used about 30ccs of dye and it was apparent that her tummy was filling up nicely. When we walked out, Ella was swallowing a lot and hard. This is usually behavior to indicate that she could start retching at any moment. Fortunately, that did not happen and she fought it off as hard as she could.
Every 30-45 minutes thereafter for the rest of the day involved going into the radiology room and being rescanned. They were watching to see how the dye was processing in her belly, then small intestine, large intestine and colon. I had no idea that this test was going to take an entire day to complete, so I was a bit unprepared. In any case, Josh left me to return to the apartment where Cox Communications was supposed to arrive and trouble-shoot our internet issue.
In between sessions, Ella wanted different positions in my arms. Due to the test, we had not fed her any food. The last time she had food was 7am. I thought that she had to be getting hungry but she never showed signs of it. Also, she had her vaccines yesterday, so I thought she would be fussy and running a fever. Thankfully, she behaved quite well and was not running too warm.
Around 2:30pm once they completed another scan, they mentioned that Ella’s GI tract looks good, although the 30ccs of dye had only made it through her belly and small intestine. They wanted to see it go through her large intestine too, before they would feel comfortable noting that she did not have an obstruction of any kind. So, they asked me to return at 4pm. This meant that I had an hour and a half of time on my hands.
So, I went up to the NICU 3 to see if there were any familiar faces. There were 2 of her core nurses on shift – Marla and Kelly. They helped me settle into the conference room to feed her. The only food equipment that I had for feeding was a bolus tube set. I opted to bolus feed since it had been several hours since she had ingested any food. At about 45ccs, Ella started to show signs of distress so we stopped the feed.
Dr. Sarantos called me this evening to give me an update. The radiologist thinks that the balloon in Ella’s new g-tube might be causing a slight obstruction of the food going from her belly into her intestines. I did not take the news too seriously. This is because Ella was having these feeding issues before her g-tube was replaced last week (the Mic-key g-tube uses a balloon whereas the microvasive g-tube does not, yet we were having the feeding issues before the Mic-key tube was inserted).
Dr. Sarantos wants to touch base with Dr. Kays to see what he thinks about the g-tube interference. Also, there might be an antibiotic that could be given in small doses that might help her. Dr. Sarantos is planning to think about it over the weekend and take appropriate action on Monday.
Based on what I saw all day during the procedure, I think it might be a motility issue. It just seemed that it took forever for the 30ccs to go in her belly and be digested by her intestines. Since we have her on a food schedule and are pushing a lot in her belly each day, it would make sense in that the problem is intermittent and that different amounts can cause discomfort, depending on how much is in her belly and/or digested at the time.
Does it mean that maybe the Reglan medicine that she is already on to help with digestion simply needs to be increased? or maybe the timing of administering the Reglan is important? or do we go ahead and give her a different medicine to help things move along? Either way, it feels good that Dr. Sarantos really wants to help. We look forward to seeing how Ella does over this weekend and revisiting with her early next week.
Please continue to pray that Ella will grow stronger and make progress this weekend. Also, that it will be a restful weekend for me and Josh. We had a lot happen this week and need to unwind a bit.
Psalm 44:26
Rise up and help us;
redeem us because of your unfailing love.
