Monday, October 31, 2011

Five Days of Silence

On October 13, 2011 Catherine had surgery to correct her left eye.  The surgery was only about half an hour, but she was put under general anesthesia, which includes intubating her.  The surgery went fine.  We were all home by noon.  She was still under the influence of all the drugs she had been given during the surgery, as well as the painkillers we were advised to give her.  So, she basically slept on and off all Thursday afternoon.

We were told that she could go back to school on Friday, so we got her ready and took her in.  She did not talk at all that morning, and kept pointing at her throat.  I figured her throat might be sore, but she seemed fine other than her refusal to talk.

When I picked her up after school, her teachers and the nurse said that she has refused to talk all day.  hey said that she did a great job of using basic sign language, pointing and grunting to communicate.  But she had not uttered a word all day.  They also said that she refused to drink any water, which she normally does. 

That night she seemed fine, but still not vocal.  She and her sister played.  Catherine laughed without opening her mouth.  When I asked her what TV show she wanted to watch, she tried to spell it in the air with her fingers.  I pretended I didn't understand her in an effort to get her to speak.  She then ran to her bedroom and came back with one of the "Super Why" books.  She pointed to the title of the book, which is also the title to a TV show.  Sabrina figured it out (of course I had too) and screamed out "she wants to watch Super Why!"  Sabrina thought this was a game.  I was very frustrated and annoyed.

After dinner we got hte girls ready for bed, Catherine still being silent.  Robby took Sabrina to another room to read to her.  I sat in Catherine's bed with her.  She brought me a Fred & Ted book.  She opened it up and pointed to the words.  Then she pointed to my mouth.  Then the words, then my mouth again.  It was obvious she wanted me to read it to her.  I told her I would only read it if she would say the words "Fred" and "Ted."  I told her I would read all of the other words in the book.

The first time one of the words I wanted Catherine to read appeared, I stopped and looked at her.  She kept her mouth shut and pointed to my mouth.  I said "No, you say the word."  She shook her head no.  I said "Catherine, you can say one word."  She opened her mouth about a millimeter and mumbled something.  I accepted her attempt and read the rest of the words. 

Another word I wanted Catherine to read appeared on the next page.  Again, I paused for Catherine to read it.  She opened her mouth a millimeter and mumbled something.  On the next page, I paused for Catherine to read the word.  She simply closed the book, got out of bed and put the book back on the shelf.  She came back and started to cry.  This was very unusual; normally she loves having books read to her.

Her refusal to open her mouth started to concern me.  I asked her why she wouldn't talk, even though I knew she could.  She kept pointing to her throat and shaking her head.  I am embarrassed to say that I yelled at her some.  But I still could not get her to speak.  So, I got worried.  Very worried.  I thought maybe the surgeons left something in her throat.  Maybe they damaged her throat and she was unable to swallow.  If she couldn't swallow and clear out her throat, she would be at risk of aspirating or choking on vomit if she got sick in the middle of the night.  She could die.  I wasn't comfortable with her falling asleep at this point.

I told Robby that we should take her to the ER.  He said "because she's being stubborn and playing a game with us?"  I told him I thought she may still have a foreign object in her throat, or maybe they paralyzed her vocal cords.  Robby yelled at her, threatened that she better not be faking it.  We called the Scottish Rite nurse's line.  They said that if she would not open her mouth, we should take her to the ER.  So, I went.  By this point it was late at night and Sabrina was asleep.  So Robby stayed home.

At the ER the doctor used a tongue depressor to wedge her mouth open.  He looked inside with a flashlight.  He said that she had a "bruised uvula" (that dangly thing in the back of our mouths).  He said it definitely hurts her to talk, but that we just have to give it time to heal and that she should start talking again in 4-5 days.  He said that sometimes people will get serious throat infections as a result of anesthesia, but that she did not have that.  I asked what should I do while her throat heals.  He said "enjoy the silence."  He told us to pump extra fluids into her to make sure she did not get dehydrated.  We went home.

On Saturday she was fine, but still silent.  She also refused to drink anything.  She wasn't swallowing, so her mouth would fill up with saliva.  Every few hours she would open her mouth a little and a puddle of saliva would pour out. 

Still, she seemed well enough to take her and Sabrina to Disney on Ice.  They both loved it, watching every movement.  Sabrina chatted throughout the entire show.  Catherine pointed at the characters and jumped up and down when her favorites appeared.  When Cinderella's step sisters skated out, Catherine pointed at them, made the sign for NO and then hugged her own arms.  When we met the mean stepsisters in Disney World, Catherine tried to hug them.  One of the stepsisters pulled away from Catherine and sneered "I don't hug!" 

By mid day on Saturday, Catherine had gotten pretty good at using the sign language she knew, as well as making up her own signs.  Sometimes she would use her dry erase board to write down what she wanted to tell us.  It was almost always totally obvious what she wanted, although she did not speak.

On Sunday we took her to church and she did not speak there.  On Monday we took her to school and told them she had a bruised uvula.  Her teacher told me that during her guided reading group she refused to speak and pointed to her throat.

By Tuesday my patience had run thin.  Surely her throat was better by now.  I have had surgery and remember my throat feeling dry and sore for a day or two.  I cured myself by eating a bunch of ice cream.  Catherine of course would not eat ice cream.  But I couldn't even get her to drink some water.  I felt certain that if she drank some water, her throat would feel better. 

At times I thought it was becoming a game for her, a battle of wills.  She was toying with us, knowing that we were getting very frustrated with her.  I felt like all of our conversations were me asking her "yes" or "no" questions.  Or she pointing and grunting to what she wants, like a one year old does.  All of our communication with her had become very shallow.  There were times I would yell at her, threaten to punish her if she didn't speak. 

Robby would take over for me interacting with her when I got too frustrated.  He would do fine for awhile, but then he would get overly frustrated with her. 

Interestingly, Catherine and Sabrina still played well together.  They would laugh at each other even if Catherine wouldn't open her mouth.  Sabrina talked twice as much, basically interpreting Catherine's signs and pointing for everyone else.  There were times they would even fight with each other.  Catherine would make facial expressions, aggravated grunting sounds, and arm gestures to show her anger at her sister.

By Wednesday morning I was beginning to worry if she would ever speak again.  Would she be silent the rest of her life?  Would she be able to stay in a regular classroom if she was mute?  Should we sign up for more advanced sign language classes?  Should we get her an iPad so she can type to us?  Could surgery repair her uvula?  My mind was on overdrive with worry and wild speculation.

On Wednesday afternoon she had a follow up appointment with her eye surgeon.  I told him that I wanted a copy of all of the surgery notes and I needed the name if the anesthesiologist.  I told him that I think her vocal cords may have been permanently damaged.  Maybe she had had a stroke during the surgery and suffered brain damage.  I was not a happy camper and was pretty nasty with the doctor.

The eye surgeon said he is not an ENT, but he would look in her throat.  He wedged her mouth open with a tongue depressor and shone his light down her throat.  He told me to look at it,  It seemed pink to me.  He said it looked healthy to him and he didn't see any bruising.

He turned the light off and removed the tongue depressor from her mouth.  Catherine then said, clearly and distinctly, "So I can talk now?"  The surgeon looked at her and said "Yes, you can." 

When she wouldn't talk, I had no idea what Catherine was thinking. So, I assumed she wasn't thinking. When we were leaving the eye surgeon's office, we stopped at the hospital cafe so I could get a cup of iced tea. They were out, so I couldn't get any. As we were leaving the cafe and walking to the car, Catherine asked "Are you sad because they are out of iced tea?" This was the first conversations we were able to have in five days. It was so precious that we could talk again!

When she and I went to get Sabrina, Catherine ran into her classroom and shouted "My five days are up!  I can talk now!"  Apparently when the ER doctor told me her uvula would heal on its own in 4-5 days, Catherine took it as a directive that she should not talk for 4-5 days.

In fact, on Thursday when she returned to school, Catherine got "written up" for talking too much in class. 

Now that it has been two weeks after it is over, I have to remind myself that it was only a five day period.  I remember the ER doctor telling me to "enjoy the silence."  I didn't enjoy the silence.  I panicked.  I let me worst fears take control.  I accused the doctors of malpractice.  I yelled at Catherine.

Now my fears are gone.  I have the luxury of perspective.  I can now empathize with parents whose children are never able to talk with them.  It was so hard to have any meaningful communication with her.  I have always been a talker, but now I truly understood just how important speech is.

1 comment:

Britt said...

This is precious. Love your sweet Catherine and her family.