Emma 4/21

Emma still continues to struggle with swallowing with feedings. It is from all the unpleasant oral stimulation she had with the tubes for so long. Emma will be getting a speech consultation to help work with this problem. She can suck really good on a pacifier and loves it. But, give her something that makes her swallow like a bottle/breast and she becomes quite unhappy. If being unhappy doesn't make the bottle/breast go away she has become quite the pretender in making even the nurses think she is sucking and getting something. Emma also was started on methadone around 5 pm. Methadone is a pain medicine she can take by mouth instead of IV. They would like to be able to get rid of Emma's PICC line (special IV line in her leg). Right now the fentanyl is the only thing Emma needs it for and it is a risk for infection the longer it is in. They will decrease her fentanyl in half after she has had 2 doses of methadone and then will work on decreasing the fentanyl even more. She gets the methadone every 6 hours for now. The big concern is that Emma not throw up the methadone. She has had a few problems with throwing up but managed to keep the 5 pm dose down me holding her upright for a half hour after her feeding and medicine. Emma's chest tube dressing is off. It has a little scab but looks pretty good. Her surgeon Dr Kane is back and said her latest chest xray looked good. Hugs to all!
Keep the prayers coming.