UCLA CT (cat) scan and ABR

First of all UCLA is a wonderful place, just not set up for small children. Sorry for the long blog.  Will make a goal to have shorter blogs with photos in future.

Short version
That being said, things went well.  After lots of prayers- things ended up being different than we hoped for but still good.

Lillian had a sedated ABR, which is a hearing test they do on small children measuring their brains response to sounds.  ie did they really hear it.  The other hearing test are so subjective at such a young age.  We got her results back while we were waiting for her to wake up.  Her hearing is a lot worst than we had previously thought.  She cannot hear most spoken language.  That was hard to take.  As the audiologist continued to talk and graph Lillian's results, my mind kind of shut down sadly thinking of all the whispered I love yous never heard.

Luckily, we have the hearing aids and were able to have them reprogrammed to match Lillian's hearing loss exactly.  Basically they just turn them up.  This weekend she was telling me by pointing to her ears that she could hear a lot of things.  She also is making more sounds when she jiber jabers and talks.

We did not hear back from the ENT doctor about the cat scan for several days.  Made my mom nervous, for me it just gave me more time to pray everything was alright.  Which is was.  Her inner hear has all the parts needed to hear, it just must be the nerve that is not working.  To be honest I am still figuring out where and what she hears.  Looks like we may never know the why.

I had about twenty phone calls from UCLA departments the week before the procedure.  Asking me questions, billing information, Lillian's health history, what would be going on when we came in.  The thing I was most concerned about was Lillian was not allowed to eat food 8 hours before and she could have clear liquids up to 2 hours before.   Our check in time was for 6:30 am so that would not be a concern, or wasn't supposed to be but I fixated on it and worried.  What happens if she found an animal cracker in the car that morning.  Must clean out car. What happens if she found food in the middle of the night?  etc etc etc

We got there and checked in right on time.  We had one procedure scheduled for 7:30and one right after so Lillian would not have to be hungry or under to long.  We get there and the nurse says you are on for 8:30???  Two hours waiting with Lillian awake and hungry??  yikes,  I told her I was told 7:30 and she looks through some more paper work and finds oh yes we were on time and it was 7:30.  Also I had our Doctor fax three separate people Lillian's physical and history we had done friday before.  I also brought a copy myself.  Good thing because none of the nurses had it!  After signing away everything.  I meet her team.  An audiologist, one nurse for the cat scan and another for the ABR(they assured me they would be with  her at all times and transfer her to one another.  Calmed my worries which I never voiced but still feared -- Lillian lying in some hospital room alone.  They had us change lillian into a little hospital gown and give her some medicine to make her sleepy.  She greedly took a sip and spit most of it out.  Nasty stuff she seemed to say.

We tried to give her more, but after five minutes she was very heavy.  I put her in the hospital crib and she grabbed hold of Nemo which my brother and sister in law had gotten her from NYC.  Steven and I said good bye and watched her be pushed away her back peeking out of the hospital gown, sitting up in the crib holding on to nemo for dear life surrounded by her team of 7 made up of doctors, nurses and helpers.  I wish I had taken a photo, the memory is vivid in my mind.  Steven and I watched then started to walk to the exit to go down stairs, when one of the nurses came and got us telling us we could follow her little longer.  Lillian was loopy at this point.  Smiling and waving nemos fin at those around her.  She had endeared the staff to her quite quickly.  We walked with her and her crew down to the CT room.  When they lowered the crib bed so we could say/ kiss her goodbye.  She had no clue who we were.  Was all smiles and byebyes.  I wonder what she would have been like if she had taken all the medicine ZZzzzzzZzzzz

We went and got breakfast.  Then waited and waited and waited.  I was grateful we had Jackson with us to hold and take care of.  The waiting room was crowded.  You checked in and got a pager (like waiting at a restaurant) the hostess would come around and ask what patient you were here for.  They had a seating chart so they could come get you when the Dr called.

Finally we got called up.  I walked back first then warned Steven that Lil was still out cold, hooked up to what seemed like a million machines and had a breathing mask on.  Its just hard to see a loved one like that.  We spoke with the audiologist and then Jackson was asked to leave.  It was a common room with curtains dividing the hospital beds from each other   I went and feed Jackson downstairs.  Sat with him for a little while then went back up stairs to check on Steven, Lillian and get some food.   Lillian was just waking up.  Steven saw me and we switched kids.  Waking up was hard.  She did not have her hearing aids in so she was confused she had all these sticker on her monitoring her vitals etc.  She did not like all the wires around her and she was hungry.  I rubbed her back, but her hearing aids with her and tried to calm her down.  They got her a Popsicle which she enjoyed for a little then started screaming and tugging at everything.  In the middle of the screams we got a new nurse who let me unhook most of the wires and hold Lillian.  I rocked her and held her.  We soon were moved to a recovery area.

 Lillian was given food and allowed to watch a movie.  Steven found us and told me he could hear her screams down the hall.  The nurse in the new area kept telling me it was time to go.  I can, discharge you right away, right now you can go.  Which yes, I wanted to get out of there, but Lillian was still out of sorts, attached to the IV and couldn't hold her head up on her own.  So I ignored 'the let me get the discharge papers please' and held Lillian while they took out the IV and she watched the movie.  The nurse later told me that she sees me there (at the hospital ) all the time.  This would be my first and hopefully last.  She looks confused like I am lying to her.  All the other nurse were great.  It was lunch time, maybe when Lillian left she could go to lunch, don't know but I did know the discharge papers were all there.  As I am finally walking out she calls out to me I have to sit next to lillian on the way home so her head doesn't fall forward.  Not sitting in the back seat between two car seats.  We got some in and out and all felt better.

Lillian bounced back great.  Other than two bruises on her hands you would never know she had such a big day last week.  Steven and I were drained.  My mom was brilliant and dropped off Elliott after being in charge of him all day along with dinner for all of us.  That night the missionaries brought over some flowers from our Bishop and said they knew days like this were hardest on moms.