My laptop crashed a couple of weeks ago and to save everything we had to completely restore the computer to it's original settings. Therefore this post will not contain any photos because they're on another hard drive. We have so many new pictures and videos to share I can't wait to get everything organized again!
Yesterday was quite the busy day for Presley! We met with the medical team to discuss our progress and our plan to get Presley healthy and home! Her day started out with her second barium swallow. I shared with Corey that I wanted Presley to have another barium swallow (upper GI) with the simply thick. When she had her first barium swallow with the simply thick she was not on Prevacid or Bethanecol. I was curious to see if it would make a difference now that she has been on those medications for a bit. Literally 30 minutes after I shared these thoughts with Corey did our Nurse Practioner call and let us know that they were going to do another barium swallow! Crazy! Well we found out that her swallow is great and that she is able to handle regular milk without the simply thick. The problem is that once she had eaten 40 cc her stomach was full and was not draining into her intestines quickly enough. Therefore her stomach just continued to fill up. She became uncomfortable and thus the arching of her back begins. She gets so uncomfortable that she fights the rest of her feed. They decided to do a few x-rays throughout the rest of the day to watch the barium move through her intestines and see how quickly it moves. They also did an ultrasound to rule out pyloric stenosis. Her pylorus looked great. There was not thickening or spazaming. If there had been an issue she would have been sent downtown yesterday for surgery.
Now this brings us to the solution. We need her food to move through her intestines quicker. There are three motility medications. Bethanecol (she has been taking), Erythromycin (an antibiotic used for motility in situations like this) and Regalin. We are taking her off of the Bethanecol and starting her on Ereythromycin. It will take approximately 2 weeks to see a difference, if we're going to see one. If we do not see a change in 2 weeks with her eating and the motility of her food then we will be transferred downtown to see a GI specialist. From there a variety of things could happen from putting her on a combination of the three motility drugs mentioned above to surgery. We are asking for prayer that we see improvement with the Erythromycin and that she is able to eat successfully.
She is testing developmentally as a 40 week old baby and she is technically 42 weeks so she has made great progress! She still becomes very stressed when she is handled but physical therapy has begun working with her daily. We want to change her habit of arching and fighting her feeds because the muscles in her back and shoulders are becoming very tight. We don't want this to continue because it will interfere with her having successful tummy time, crawling, etc. Therefore we only feed her (bottlefeed) until she is frustrated and at that point we continue the remainder of her feed through her feeding tube.
We've been telling people all along that she is still there to learn how to eat but really she already knows how. She desires to eat, has a great suck-swallow-breathe pattern, & can hold her pacifier. We are grateful that we now know why she has been having so much difficulty and praying for a solution.