Rough Two Days

Thank you all again for being so patient after we got you all excited Thursday night about the media. As we told you it was an extremely late night Thursday as things went a little south after the update. Yesterday was not much better. After our very late night we returned early Friday to the hospital. Elias was resting, but not particularly comfortable. He was moving around a lot and fussing. The nurses think it is some withdrawal from the fentanyl. He started spitting up the same frothy saliva that is leaking out of his G-tube late morning and into the afternoon. He did it four or five times while we were there. We think he might be gagging on the OG tube going down to stint the esophagus open. Now that he is off the steady sedation of the fentanyl he is probably noticing it more. He is getting morphine every 3 hours, but that wears off after time. They were weening him off the morphine, but his nurse last night recommended they wait a few more days before going down anymore. Part of the plan for sometime in the next few weeks is to remove the OG and replace it through the nose or even better the silk suture if possible. We are against the wall a little with this because he needs the tube to hold the stricture open, but him gagging and spitting up makes the stricture potentially worse. We hope they choose to do the dilation and replacement of OG sooner rather than later. For now Elias is just going to be a little fitful and fussy for a few more days unfortunately.

There is a little rumour going around that they might try Elias on Si-Pap today. It would be a huge step forward if he can sustain on that instead of the vent. It would be easier to ween off the pressures of the Si-Pap and could be machine free quicker. We can all say a little prayer for success here.

Finally, we have another family meeting with the medical team on Thursday at 8 am. We are hoping for some productive planning and consensus on what we need to do to get Elias home. We are also going to voice our negative opinions about him being sent to another hospital for transition. It is much more convenient and closer for us to stay where we are, if it is at all possible. Some of his nurses think it might be and have encouraged us to let them know how we feel. We hope everyone enjoyed the photos & video. Thanks again for all your support, you have know idea how much it has helped us through this very difficult time.