Well we made the drive to John Hopkins today to have Ellie admitted for her GoLYTELY clean out prior to procedures and surgery tomorrow. However, when we arrived we waited for a while to find out what room we would be in, we found out that there was an unexpected number of admits today. Basically we did not have the option of waiting for a room to come available.
After talking with her DR A, her GI, we decided the best thing would be come back home for the night, and do another clean out as best as we can with a large dose of Miralax. This is going to make for a LONG night. Unfortunately, we started the strong Miralax at 7 and it is now 9:30 without even having to go yet.
We talked about the plan for tomorrow, and she asked if I am against a GJ-tube for her to try and increase the feeds that are digested and not just dumped back out into the ferral bags. For now we are going to have to start with a Mic-key GJ, then we will be able to switch to a AMT JG with her next button change.
We talked about placing a gj during the at the end of her scheduled set of surgeries and procedures. If they are not able to place the gj at that point they will move to the flouroscopic procedure and place the gj tube then.
At least we know the colonoscopy will happen tomorrow whether or not we can get her cleaned. Dr A will finish flushing her out then get the pictures and biopsies needed.
They are also switching from her soy based formula to Neocate, an all elemental based formula effective tuesday. Tomorrow will be a long and exhausting day for all and we are HOPING to get her at least mostly cleaned out before going in tomorrow.
Sadly the hardest part is that Ellie is now not allowed to eat anything at and can only have pedialyte now until the dr's say otherwise. This is going to be by far the hardest for her to deal with.
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