The short and long of it

The oncologists, surgeons and GI docs got together after seeing the results from his contrast enema. The consensus is that James needs an ileostomy. The plan is for this to happen tomorrow. James will be an add-on, but we are hopeful it won't be too terribly late before he goes for surgery--that would be a good thing to pray about.


I had a really good conversation with Dr. Iffie this afternoon. I told her that if when we came to the hospital and were told 'Plan on living here for the next eight months', we could live with it and make it work. (As an aside, children who have the other kind of childhood leukemia--AML--do stay for about eight months.) But, we can't deal very well with this three more days, oh, one more week, oh wait, we have to fix this, oh, four more days.... She was very understanding and said she couldn't deal with that either.


Then she laid it all out on the line for me. She said we should plan to be here for at least another two weeks. Then she explained that because James will need so much care at home--medications, supplies, special formula (possibly), medical equipment, etc.--he will have to have a home health care agency to look after him, do home visits and provide supplies and equipment. No home health care agency will touch us until James has medical coverage, but the hospital can keep him and continue his care. (We actually heard this in Minnesota too, just before we left) Once James' Medicaid is approved, the hospital can bill for previously provided services. The home health care company cannot do this. Essentially, James will need to be in the hospital until his Medicaid is approved. Knowing this is actually a relief. Not because we want to stay in the hospital, but because we kind of suspected this would be a longer stay than many were anticipating. Now we can plan with a more realisitic perspective.

After Dr. Iffie's visit, we enjoyed our own visit to the garden. James waved to the little boy with the trumpet.

Love, Stephanie