Fun With Bureaucracy.

Here’s how I’ve spent today:

1. Filling out form asking for my daughter’s medical history, i.e. checking boxes indicating previous crises with nearly every organ system, and under “PLEASE DESCRIBE,” writing “Prematurebirthat25weeksPDAligationGradeIIVHRenalfailureAorticthrombus
OsteopeniaROPRefluxApneaBPDonPrevacidandPulmicort.

2. Waiting in germ-infested waiting room with wriggling, impatient baby.
3. Watching baby, sitting in a small audiology booth, fail utterly to turn her head to sound.
4. Holding same wriggling baby while an audiologist attempted variety of other tests involving sticking various probes in baby’s ears.
5. Being told that, in the end, none of the tests were of any use, due to aforementioned wriggling.
6. Being told that we will need a different test altogether.
7. Being told that no, we can’t do it today, because it is done in a hospital under sedation, and we weren’t scheduled for that test, only THESE ones.
8. Wondering WHY we weren’t scheduled for that test, i.e. why no one thought that a six-month old would have trouble sitting still while small plastic pokey things were inserted in her ears, pokey things that emit both sound and small puffs of compressed air.
9. Feeling fairly certain none of these people had ever met a baby.
10. Returning to germ-infested waiting room to wait for next section of appointment.
11. Being told by ENT that because baby passed her initial hearing screen when she left the NICU, the problem is more likely to be fluid than nerve damage. (Hooray!)
12. Holding terrified, SCREAMING baby while ENT removes wax from baby’s ears with metal instrument. (Boo!)
13. Having to hold wild baby so hard I am certain I will snap several of her bones.
14. Watching ENT peer into baby’s ears while wearing silly-looking strap-on metal disc over his eye.
15. Being told that it looks like there may be a little fluid in baby’s left ear, but he can’t be certain.
16. Being assured that sedated test will be able to tell us clearly what is going on—unlike, you know, THIS APPOINTMENT.
17. Feeling exhausted.
18. Being told that we will probably not be able to get into hospital for sedated test until three weeks from now.
19. And that after THAT, we will need to return to the ENT, to Make a Plan.
20. Feeling briefly homicidal.
21. Being told to go home and wait, and someone will call me within 48 hours to schedule the appointment.
22. Refraining from telling ENT exactly what he can do with his 48 hours.
23. Speeding home muttering to husband about Time, Waste Of.
24. Calling the hospital short-stay surgery unit myself.
25. Being informed that their first opening is not in three weeks after all!
26. It is in SIX weeks.
27. And that Simone will need to see her pediatrician no more than seven days before the procedure.
28. Which will begin at 7am.
29. Arguing that taking a 25-weeker to a pediatrician and then a hospital at THE VERY HEIGHT OF RSV SEASON is possibly not a wise idea.
30. Being told it is Policy.
31. Crying.
32. Eating large plate of pasta.
33. Thinking if President-elect Obama were there, he would fold me in his spindly embrace, give the Short Stay Unit Coordinator a firm but gentle rebuke, and she would damn well find me an earlier appointment.
34. Leaving message for doctor from NICU follow-up Clinic who referred us for testing in the first place, pleading for mercy.
35. Waiting by the phone.
36. Hearing nothing (Much like baby! Ha!).
37. Writing this.