For now, surgery has been delayed indefinitely. We met with the surgeon today, who has decided that he wants to have more information about the root cause of Elijah's bowel issues before moving forward. Basically, not enough tests have been done. Also, Elijah's bowels are still completely full. I didn't fully understand how, after changing many, many diapers every day that this could be even remotely possible, but the scans don't lie. Apparently, there is blockage and the miralax is just pushing stuff around the blockage. Our orders for the weekend are twice a day ADULT sized enemas and twice a day ADULT dose of miralax.
So, on Monday, they will repeat the scan, if he is still full, then they will admit him for a bowel cleanout. Yeah, that doesn't sound fun. Then they will do an enema contrast to see the shape of his bowels. Finally, they will do a bowel biopsy to determine which part of the nerves are dead - and which are not. If there is enough functioning bowel, they may be able to do a "pull-through" procedure that will allow him to function fairly normally, but with a section of the bowel removed and the good stuff all connected together. This is only a possibility.
Another possibility is that by cleaning his system out - allowing him a clean start, it would allow his body to "learn" how to control his bowels. They aren't holding out a lot of hope for this, but think we should try.
Finally, we could still end up with a colostomy. Again, not what we want, but one way or another, we think that we have a good team of doctors that is committed to quickly running more tests and assuring us that it is the right move, right now.
I feel exhausted from the quick change of plans, but happy to have more answers before moving forward. I hate giving the enimas - it is torture for Elijah and the first one didn't produce a lot of results.
Pray that we'll get through the weekend first and have more answers on Monday. We go in for a scan first thing and then see the doctor again at 11.
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