Time, Hospitals, and FODsTime? Once you walk through the sliding glass doors into the E.R. you have exited whatever time zone you formerly occupied and have entered Hospital Time, cue music.
If any hospital employee, from the care partners up through the Director of Pediatrics makes any sort of estimate that involves time- ignore the estimate. It, no matter what It may be, will happen when It happens; this is the definition of Hospital Time. Once you learn this, hospital life is a lot easier to handle.
E.R. staff have their own groove and time expectations. A kid comes in vomiting with diarrhea- give them an anti-emetic, watch them and discharge them as quickly as you can. No biggee. When it comes to FODs? Throw out all time expectations and hopes of a quick discharge. Plug up your ears when an enthusiastic Resident* unfamiliar with FODs tells you, "Oh, diarrhea is no big deal, once your child stops vomiting and eats a few Popsicle they'll be fine."
This is when having a specialist you trust is such a blessing. This is when you lean on your protocol letter. This is when you depend on what you have studied about your child's disorder. This is when you depend on your own knowledge of your own child. This is when you realize that the only meaning "time" has at this point is that you want more of it.
Both of our FOD affected boys were admitted to the hospital last week with a gastrointestinal virus. One son bounced back on D-10 plus potassium and was able to start eating and be weaned off the I.V. within 36 hours. Our other son, with the very same virus, was on D-10 for a full 6 days and required yet another 36 hours to stabilize off the I.V.
The time difference was a matter of life and death.
*I highly recommend finding a good E.R. and a good hospital and sticking with it. We have spent every one of our 9 hospitalizations for FODs in the same E.R. and been admitted to the same children's hospital. At first we continually saw new Residents unfamiliar with FODs, but now it seems that the whole E.R. knows what to expect.
This is vitally important because it means.
- We are now whisked through triage.
- We don't have to wait till our sons are already in full blown crisis to "prove" that they need treatment.
- Our sons are given the time that they need to heal.