Compressed Feeding - Rapid Progression

On Sunday Elias began the compressed feeding regiment to prepare him for bolus feeds. Today at 12 pm he got his first bolus feed, getting his full feeding volume in 20 minutes, via a pump. At 3 pm they will do the bolus feed with gravity alone to see how he tolerates that. He should do fine consider he has progressed so quickly up to this point in only 3 days. We will also have the final written report on Elias' developmental evaluation by the end of today. We will find a way to share that with everyone tonight or tomorrow, depending on when we get it.

Weekly discharge rounds (every Tues) did not yield the information we wanted. In fact, as our nurse told us, there were varying opinions being discussed. We were already setting up a family meeting with his Ped Surgeon to discuss some long range care, particularly with the G-Tube, but we have now asked to make it a full family meeting. We feel that we all need to sit down together and collectively decide what the plan is going to be, especially since there is not a general consensus amongst the medical team. Keep in mind this is not a bad thing, it could certainly work to our advantage. We are shooting for next Tuesday morning for this meeting. Our Social Worker, bless her heart, is really working hard to help us out. She really feels that we have some very legitimate reasoning for not moving Elias. It is certainly not like we are just saying we just do not want to go. The case manager did tell us today that once the g-tube is cleared that doesn't mean he will be able to go right away. A bed will need to be available. She also spoke with the MWP director this morning and on Friday she might have some information for us on a timeline for a spot to open for Elias! So a little bit of sunshine peaking through the clouds today. Of course when we are with Elias our heads are way above those clouds, so there is always a little sunshine in our day. Besides, who can resist that big smile :D