Ella did much better last night from an oxygen standpoint. She was stable on 1 liter. However, she might have gotten dried out because she woke up every hour fussing and asking for a drink. So I was up and down a lot and finally when I laid back down at 4:45am, I was not able to go back to sleep. After tossing and turning for 30 minutes, I decided it was a new day and ran to the coffee machine.

Ella’s mood was pretty good considering that she was not allowed to have any food or drink after 10:15am for 4 hours. She enjoyed the ride to the hospital and walking around the hospital. She was in a great mood; smiling and kicking. Anytime that she has a chance to go out into the real world, she gets excited to be out of the house.

We did the upper GI first. They filled up her tummy via her g-tube. There was no retching and the gastric emptying was good. This has been consistent with our experience. It also confirmed that her nissen is still intact and she does not require surgery – Praise God! Then, they offered her a drink of barium liquid to watch it go down her esophagus. This is where she normally retches. Sure enough, she took several swallows and started retching. You could see it going down her esophagus and then building up, higher and higher towards her throat. She was trying to fight it off, but retched pretty good. This was all done while she was lying down. It took about 1 minute for her to swallow and have the liquid go through the nissen into her belly.

The radiologist had her drink more, then propped her upright and the same process occurred, but gravity helped and it all emptied into her belly in 30 seconds. So, I asked him how long it normally takes us to swallow and empty into our belly (if we do not have the nissen), and he told me 15 seconds. So, her emptying is delayed from her esophagus through her nissen into her belly. The radiologist noted that he does not think her nissen is too tight; it appears to be functioning. But, it is somewhat tighter and not allowing the emptying at the most optimal rate.

The retching last summer was because Ella needed surgery. The nissen had herniated and was pushing into her esophagus. Since the surgery, the surgeon made the nissen tighter (probably because he did not want it to fail again), but now she is retching hard and frequent because it is not emptying fast enough. So now we will follow-up and see if there is anything we can or should do to help alleviate the retching.

Ella got real upset through the procedure and had a good cry. She did not like the radiology technician holding her arms down and twisting her around…especially because she was a stranger and “not safe”. When we went across the hall to the renal ultrasound, Ella could use her binky and cuddle her frog so it went a bit better. The technician was not willing to mention anything, so I don’t have any idea about the status of her kidneys.

Overall, she seems to be doing better tonight. She did not get lots of napping in today, so she was fussy and cranky tonight. Once she took a bath and was fed, she was ready for the bed. I’m hoping that she sleeps well throughout the night.

We’re praising Him that Ella does not need surgery for her nissen. And, we are still seeking Him for wisdom and discernment on whether or not we need to take any steps to improve the retching (Is there anything we can do? Would a procedure make it better or worse in the bigger picture?). We’re hopeful about the renal ultrasound that her kidneys have improved and not worsened. And we’re trying our best to be patient about the next steps for the SVC procedure.

Thanks for all the love, support and prayers. They mean so much as we seek Him for answers.

Deuteronomy 4:29 (NIV)
But if from there you seek the LORD your God, you will find him if you look for him with all your heart and with all your soul.