Things to bring-
All Medical records- no matter how many times you call, fax email those records when it comes to it they will get lost misplaced or disappear the day of. Bring your binder.
Comfort item for your child, blanket, binkie, stuffed animal. Toys, books and movies. Nothing ever runs quite on time anywhere. Lillian can read our emotional state better than anyone I've ever met. I am nervous and she is a wreak. If I am distracted distracting her then all is better in the world.
Bring snacks and water for you and a baby if you have one handy (okay joking, but for me, as a mother, having Jack to hug kiss and care for while we waited was very helpful to me) The cafeteria food was amazing also but I always like to have snacks on hand just in case. We had breakfast there.
Lillian the weeks prior to the procedure had just began to understand the concept of bandaids and being hurt. I bought some of her favorite bandaids for her.
Lillian was surrounded by older people prior to her ABR and while she was waking up. It was a large room with beds agaisnt the walls and a large nurse's station in the middle, carts everywhere to monitor peoples vitals and get them ready for why they were there. Small blue curtains were meant to separate each pacients zone. Early in the morning we were the only family on one side of the wall. At this time they let us hae Jack with us as he is adorable and a distraction to Lillian.
We sat in the lovely waiting area after eating breakfast with mostly medical students at the cafeteria. We checked in with the receptionist and got a pager so they could let us know when Lillian was done. We sat in the back corner of the room so I could nurse Jack discreetly with my cover. Taking care of Jack and listening to other peoples conversations helped me feel a little better about everything.
We were called up after a few hours. The shock of seeing Lillian strapped down with tubes and lines everywhere was shocking. The audiologist was also trying to go over the initial findings. I just remember hearing that is was much worst than we intentionally thought and then I checked out. Blah blah said this nice young audiologist as I sat and stared at Lillian. I was in shock. Total shock. Some nurse saw I was holding a baby and kicked us out of the room. Steven stayed with Lillian.
Upon waking up most of the beds were full. Waking up to find yourself taped down to a bed with tubes out of your nose and arms would be frightening to any child. My highly active hard of hearing Lillian found it hysterically frighting. I was in the hall way nursing baby brother when my husband frantically called me. Help? where are you? she is waking up and needs you! She really did not need me. She was still in a fog of medicine. It was more that hospitals freak Steven out (totally freak him out) and seeing Lillian taped up and strapped down was to much to him. I was to much for me also, but some parents have to go though this often for other procedures other than an ABR. Breaks my heart to think of them.
I walked and handed off the baby. The baby technically wasn't even allowed to be in room but we had to switch off somewhere and leaving either child alone was not an option in our minds.
On nurse kept telling me I had to make her be quite. How to you make anyone be quite? Let alone a child who has very little understanding of the world around time. I comforted her the best I could as she was taped down and strapped in bed. Finally a new nurse came along and handed her iphone to Lillian. It was pink and I remember being afraid Lillian would throw it on the floor. I switched it out for my purple one. The next nurse helped me unstrap and tape Lillian so I could hold her. Once I got her out another private recovery room had opened up so I had to pin her back in the crib bed and walk with her to the other room. Didn't see Steven and Jack, no phone reception to tell them were we had gone. Lillian still howling. Get her in the new private room and get to hold her change her diaper and comfort her. The nurse puts on a movie, a vhs of the Little Mermaid. She brings Lillian juice and crackers and tries to tell me all the rules of dismissal while Lillian cries in my ear. I remember being told I had to sit in the back seat with her and hold her head up the entire drive home. Okay you can go home now. What? No give us a few more minutes. Maybe we can untape and take out the lines she has in her hands. Oh opps okay. They took off the tubes in her arms from the medicine and offered her a plain band-aid, luckily I had brought some Dora with me. Problem solve. Steven found me from listening to Lillian's wailing.
We waited till she could stand a little and then had to leave. I think of how horrible it was in the open room recovery room and I see why perhaps the nurse was trying to rush us out. I did not sit in the back and hold up Lillian's head. We made it home totally drained from the morning.
The results were mailed to us quickly by the audiologist. I had to call the ENT for two weeks before the doctor finally returned my calls the secretary knew me by this point. The results were normal, meaning her inner ear has all its parts. Her hearing loss is from the damage in the hairs in the inner ear. Those hair are too small to see, but they are not transmitting the signal from the sounds in her ear to the nerve in her brain. She could someday be a canadit for a cocular because she has nerve and other parts of her inner ear, but only if her looses more of her natural hearing will we choose to do that. Now a days they can do implants that preserve the individual's natural hearing. Lillian is doing very well with her hearing aids. I feel this is a choice she can perhaps make someday for herself.
In the mean time I take her to get her hearing tested every 4-6 months. I get her tested aided and unaided. In the past year her hearing has not changed, varied a small amount but not changed
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