Plan Number, I Lost Count

Care conference went ok yesterday. We are going to test Olly (as comfortable and slow as we can) to see if these bowel/intestine issues are speed bump in the road, or if this bowel slowness is permanent. Trial and error, Olly will tell us what she can and cannot handle.

Going to try and increase her feeds by 5mls per day over the next week. Goal is 30 or higher with no symptoms (currently at 20ml/hr). If we can get her there and pooping twice every day, we can supplement her fluids in her g tube, or through a PICC line and we are safe to go home and monitor and are considered healthy for now. Keto is off the table, possibly indefinitely.

There is no magical test to say if her bowels/intestines are working or not or proficiently or not. We could run scopes and cameras in her, but that comes with many risks, and is not fun, and probably won't tell us anything more than we already know.

If we cannot get to 30 ml/then we consider a central line for feeds/calories and next steps there. Not getting to our goal would likely lead to having to start making some more difficult decisions in the very near future.

Since her iv infiltrated again, we are doing a PICC line for the remainder of our stay. She will need to be sedated for it. That will happen on Monday afternoon.

With Tay Sachs, we are progressing rapidly and it's going to get harder and harder for her. We will need to start deciding for Olly what is worth it, pros vs cons, what her quality of life is, and how long we truly want to prolong her life and for what reasons. Jesus take the wheel!