Renal ultrasound performed and sent to Cincinnati Children's. Too a week to arrive and another week to read. Her kidneys are not swollen. Now we have waited 10 days for the scheduler to tell us when our next appointment will be. This will be a sedated scoping of the urethra to see if she can be cathed for urine. If yes, then we will be on a three hour schedule plus two new meds to hopefully expand her bladder capacity. There are no promise or projected stats. This is a hoop we must jump through to progress.
Another hoop will be a week long stay to do a laxative trial. Massive laxatives at night and sitting on the pot in the morning, driving to the hospital for xrays of the bowel to see if it has emptied. Then bakc to your room. No outings are recommended. If she fails this week they will declare that she is enema dependent. But they have already told us she is an unlikely candidate for bowel continence.
Bottom line: You cannot get the urine port until you have tried to expand the bladder via intermittent cathing plus two drugs. You cannot get the enema port until you are proven to be enema dependent. Both ports need the appendix.
Both programs have wait times around 6 months.
Lest you think Cori is suffering, although this shoot was pre-surgical, I can assure you this is who she is every day! Except for about 2 minutes per day with rectal dialations and another 2 minutes for the start of the enema.
If we got to make our own dictionary, Cori's face would be side-by-side with her sister Jena's face under resilience entry. Lily would be in the definition of a Chinese blond.
And what will Ava be?
No comments:
Post a Comment