Kicking and screaming

So last week was pretty eventful. Lily and I drove down to Gainesville alone on Halloween evening while Chris and Charlotte stayed in Tallahassee. Her ASSR/ABR was scheduled for the following morning. It was the first time that I had ever spent a night away from Charlotte since she was born. It was a rough trip to do on my own but it would have been hard whether everyone came with me or not. Lily and I spent the night at a hotel. She slept all night without waking even once, thankfully, because she was not to eat or drink after midnight. I didn't sleep the entire night- I worried what I would do when she woke up and how I would explain to her that she couldn't have anything in her stomach. Lily becomes violently angry in her sleep when she is the least bit awakened by anything and I was afraid of how loud and furious her reaction to being away from home and being told she couldn't have a drink would be if she were to wake. The other thing I was worried about- how was she going to react to the anesthesia when she awoke from the procedure the next day.

Lily and I headed out of the hotel room at a very dark 5:30am. I had only a basic idea as to where I needed to go (and no map- duh) and I got so lost on the way to the hospital. There were some police officers hanging out in an alley way on the main bar strip near UF's campus and I flagged one over to get some help. It turns out I was only about a mile and half away from AGH Shands Hospital. I had been driving aimlessly in the dark and somehow managed to get near the hospital. We walked in at 5:55am and signed in. By 6:30, Lily and I were sitting in a surgery pre-op area. We were assigned a tiny space with room for a hospital bed and a chair and no more than that. We would sit in that tiny space for two more hours while waiting for everything to fall into place. There were 11 other tiny spaces like that one, all filled with other children awaiting various procedures.

We had a really nice nurse assigned to us. She was very sweet to us. She was also a mother so she understood my tremendous anxiety about what was going to happen that morning. It was a long time to sit there and I had lots of time to think about what I was about to do to my child. Lily would be going under general anesthesia, with all the risks that entails (and not to mention emotional upset for the both of us), for a completely voluntary procedure. I certainly thought about just skipping the whole thing. But we needed clear answers about her hearing loss that were just not going to be obtained in the sound booth and I decided that we had come too far not to follow through with the procedure. I talked with the nurse about what it would be like when it was time for Lily to go in. She said depending on who was in charge that morning (meaning whoever was the head operating room nurse) would determine how things would go. She said that sometimes the head O.R. nurse will let parents put on scrubs over their clothing, take their drugged-up-on-Versed child into the O.R., place their child on the bed, and allow them to stay until their child is completely asleep.

I was counting on this being the scenario but when it came down to it, the head O.R. nurse on duty that morning was not the child-friendly type nor was he the least bit flexible. After Lily had Versed squirted into her nostril, which left her shrieking, kicking, and screaming in shock and utter despair for 5 minutes, I had to hand off my little girl to a stranger while he took her to a room I never got to see. She was goony-drugged up at that point and was no longer crying (she was leaning her head back and forth and looking at me with drunken eyes saying, "Whoa, Mama" by then). I walked as far as he would let me with her in my arms, tears streaming down my face, and I told her that I needed to go to the bathroom and I handed her away, as she looked back at me with a scared and puzzled look on her face,her arms reaching for me. It was a terrible feeling and I felt like I had betrayed her. I felt like I had not been strong enough and had not insisted enough that I be with Lily until she was asleep. I had tried my best and even tried reasoning with him that this was not surgery, there was not the worry about everything being sterile like there would be with a surgical procedure, this was just a simple hearing test. He had his rigid rules and he was not going to bend them for me. He said that she would not remember it anyway, I said she would bury it in her subconcious and that it was a matter of her trusting me to keep her safe at all times. He said that I must be the one suffering from separation anxiety. As you can see, we were fast friends.

I sat in a surgery waiting room for 2 hours trying to distract myself from worry. I had been under the mistaken impression that this would be a brief procedure, maybe 15 minutes per ear tops. I tried to watch the Ellen Degeneres show and the Megan Mullaly show to distract myself but the TV was muted so I could only guess what they were talking about. There was a mullet-sporting dude with a particulary vulger and absurdly funny t-shirt on there in the waiting room who provided a bit of needed amusement (I think Chris would be horrified if I typed out what was on the shirt so use your imagination :P).

At around 10:30, the pre-op nurse who had been so kind to us came rushing in to the room and sat next to me. I was terrified that something had gone wrong. It turns out that they woke Lily up before they came to get me (something I told them would be a big mistake) and she was completely out-of-control. I rushed back to the post-op area with the nurse to find Lily violently kicking, screaming, crying hysterically, thrashing, pulling at the IV in her arm, and just generally going crazy in the arms of another nurse. She was almost beyond reason and it took me 15 minutes to get her calmed down. I knew it would be bad when she was awakened from the anesthesia but not that bad. It was about an hour before they would give us the green light to go home. Lily guzzled a large milkshake on the way home and she stayed awake for the entire 2.5 hour ride home. She and I went to bed at 5:00pm that night and slept all night through to the next morning.

So that is all in the past and we now have an exciting appointment to look forward to on Wednesday. I don't know for sure but am pretty postive we will know one way or the other if Lily will be getting a cochlear implant soon. This is a big week for us- Charlotte gets the pins removed from her arm on Tuesday, we see Dr. Antonelli on Wednesday, and then we are off to Disney for a couple of days. We really need a little fun trip after the rough couple of months we have had.

-Kriste

Here is a cochlear implant propoganda-ish story about a family with 2 kids with Lily's condition, LVAS.

Here is an article supporting bimodal-binaural hearing and I plan to give to the ENT tomorrow.