When Thea had surgery...

The first time the doctor suggested surgery to straighten Thea’s eyes if patching didn’t work, I dismissed it.  I was sure the patching would work, and we would be fine. 

But despite our efforts, her eye stayed shifted to the side and over time it grew worse.  In fact, both eyes had started to wander in opposite directions whenever she wasn't looking straight at us.  After three years of patching, the doctor again mentioned surgery.  I told her I would need to talk to our Nero-metabolic doctor.  I was sure that he would say no to a surgery.  She had a rare disease.  Anesthesia would be risky.  But to my surprise, my Neuro doctor also recommended the surgery.  He said it was not just a cosmetic surgery.  It could help with her balance, and she may have better vision in the future because of it. 

I went ahead and scheduled the surgery with misgivings.  Tyson was even more uncomfortable.  We postponed the surgery and gave ourselves more time to consider the idea. 

What finally committed me fully to the surgery was my appointment with the cardiologist.  He wanted to implant a LINQ monitor in the skin over Thea’s heart.  He said the procedure would require anesthesia.  The monitor would notify them if her heart rate was becoming too fast or too slow.  This was something I wanted badly.  Tango2 disease comes with a risk for arrhythmias and knowing that she was being monitored would give me peace of mind.  I asked the cardiologist if he could perform this surgery at the same time as her eye surgery.  He agreed and before I knew it, we were scheduled for two surgeries. 

The week before the surgeries was long.  I was anxious and I was looking for any sign of Thea coming down with a cold.  It would be too much for Thea’s body to cope with illness and recover from the surgery as well.  It rained several times that week and I was sure the change in weather would give her some kind of illness.  I was finding it hard to stay calm.  I was eating all the sugar I could find and instead of exercising or journaling I was coming home and falling asleep right after I put Thea to bed.  To make matters worse, Thea was getting up at four every morning.  Tyson managed to sleep past this which was fine for the first two days but by the third day I found myself growling at him.  Tensions were high. 

The day before the surgery, a nurse called me to go over all in the information for the surgery.  I reminded her about Tango2, and she said she did see some notes in her chart about Tango2.  What would you like us to do for her during the surgeries?  The nurse asked.  I paused for a moment, shocked that she was asking me.  Please give her dextrose during the procedures, I responded after a moment of silence.   I reminded myself that there weren’t any proven protocols for this rare disease.  Every doctor that I’ve worked with specializes in one part of her disease.  I am one of the few people responsible for putting all of that information together.  This thought did not ease my anxiety. 

On the day of the surgery, I carefully checked Thea for signs of a cold.  I woke up with the same headache that I’d had for three days.  Thea finally slept in until 5 but I had woken up at 3 am.  We fed her a huge breakfast.  She loves to eat and was thrilled to find eggs, bacon, and oatmeal with raisins and bananas at the table.  We gave her the mito cocktail and that was it.  Now she could only have clear liquids until 11:00. 

Big Breakfast!

Her surgery wasn’t scheduled until 2:00.  This is the part that I was most nervous about.  Fasting is dangerous for kids with tango2 and I was almost dizzy at the thought of letting her go without food for so long.  Tyson reminded me that she went every night without food for eleven hours with no problem.  I kept repeating this to myself whenever I wanted to panic.   

By 10:00, Thea was unhappy with her apple juice as a snack and she was demanding lunch.  She was also allowed jello, but she wasn’t having this either.  She said she NEEDED lunch.  A sympathetic nurse slipped us a popsicle from the hospital stash, and this got us through until 11:00.  

Popsicle Time!

Feeling guilty, Tyson and I took turns sneaking into the hospital’s Subway and grabbing ourselves with a quick lunch behind Thea’s back.  We watched a movie and went to the hospital gift shop.  We read books and took a walk.  All of the time, I was watching Thea for signs of crisis or lethargy.  Although she complained often about wanting food, she seemed otherwise fine.  She could be distracted and would play with her toys.  She took a short nap in Tyson’s arms.  Watching her sleeping form, I felt panicky.  Was this a sign of lethargy?  Tyson assured me that she was just taking a nap.  She did this in the afternoon sometimes.  I took out my phone and opened up a crossword game.  Tyson’s arms were occupied with Thea, so he helped me solve the crosswords over my shoulder.  This distracted me through the next half hour. 

We were nearing the scheduled surgery and I wondered why we hadn’t been called back yet.  The waiting room was very full.  I wondered at the number of surgeries that must be going on.  Some families were tearful, gathered in a miserable huddle.  One large family sat in a circle telling jokes and loud stories.  A part of me wanted to them to quiet down so that I could concentrate on my horrible fears but I shook myself out of this thought. 

Finally, we were escorted into the next room where we would talk to the doctor and the anesthesiologist before she would go into surgery.  The nurse asked us questions.  We answered them, gently reminding the nurse that it was dangerous for our daughter to fast.  She called the doctor and said they needed ten more minutes and that the previous surgery had run longer than expected.  Thea seemed perfectly healthy and fine, humming to herself as she colored with the crayons we got from the hospital gift shop.  I took some calming breaths and looked often into my husband’s reassuring eyes. 

The anesthesiologist came into the room and introduced himself.  He was their expert in mitochondrial diseases and when I showed him our emergency letter along with the note from Dr. Lalani, he waved them away saying that he already had the copies that I had sent in earlier.  He went over his plan and told us the risks.  He said that Thea had borderline long QT and he would keep this in mind as he chose which drugs to give her.  This was news to me.  I ran over the last appointment with the cardiologist in my head.  Hadn’t he said her heart rate was normal?  Then he asked me about the breast milk I had given my daughter at 11.  Huh?  I told him that I didn’t give her breast milk.  He said there must be some kind of mistake in the computer.  The eye doctor appeared and informed us that they had put the wrong type of surgery into the computer system.  She corrected it with the nurse and explained that they system was new, and they were still working on it.  A nurse ran in to reset up the surgical room for the right procedure yelling that she needed five more minutes.  None of this did anything to ease my anxiety.  My tears were becoming uncontrollable.  When they asked who would walk Thea into the room, I asked Tyson to do it.  I needed a moment to fall apart. 

When they walked away, I finally let myself cry a bit.  I had less than a minute before a new nurse came in.  I couldn’t look at the sympathy in her eyes because the ugly cry is just not made for strangers.  She encouraged me to eat something and take a walk.  You want to be ready for whatever care your daughter needs after surgery, she explained gently.  I went to the bathroom instead and took my few minutes to fall apart.  Then I wiped my eyes and took deep, slow breaths.  I didn’t want my husband and my mom who had arrived to wait with us to have to take care of me too.  All three of us had our brave faces on.  We chatted about inconsequential things.  Tyson told us that the surgical team was impressed with Thea’s strength.  She did not go into the room willingly.  We tried not to look at the clock or stare at the families around us. 

Finally, the doctor called us back and told us that both surgeries had been a success.  We sat in the room with the cardiologist and the optometrist.  I asked the cardiologist about Thea’s borderline long QT and he said that her heart rate was completely normal and not borderline at all.  I felt weak with relief.  I couldn’t wait to see Thea. 

I could hear her crying as I entered the room and I gathered her into my arms.  The nurse explained that she was very angry before the surgery and was still in that mode.  It was unnerving to see her so upset and out of it.  I watched the nurses face carefully for signs that she was distressed about Thea’s state.  The nurse gave Thea something to calm her and she slept for a bit in my arms.  I memorized her all over again.  

Sleeping after surgery

When she woke up, she was still mad and crying.  She cried and cried into my shoulder and demanded to have all of the cords and needles out of her.  The nurse took everything off after about an hour except her IV with fluids.  This they would take out right before we left.  Thea refused to eat or drink which worried me.  The nurse told us that it was very common for kids to feel nauseous after this surgery and to throw up.  She might not want food right away, but we shouldn’t worry because she received fluids from the IV.  We took Thea to the car.  She was still crying as I walked her through the now almost empty waiting room.  As soon as we got her in the car, and started driving, she threw up twice.  We pulled over and thought about whether we should keep going or go back to the hospital.  We decided to go home. 

When we got home, she threw up on our couch.  Then she ate a few fish crackers and fell asleep in the middle of our bed.  She woke us once in the night saying her panties were wet.  The fluids had made her wet the bed.  We changed her and we all went back to sleep. 

I pictured the day after the surgery as being a day where we would lay down and rest all day watching movies and recovering.   I thought I would finally feel okay again.  I forgot to include the amount of laundry I would have to do, and I did not expect to be googling how to get pee and puke out of mattresses and upholstery. 

Thea took a two-hour nap cradled in her dad's arms and when she woke up, she was ready to play.  She was happy and we were coloring, building with blocks, and getting ice cream.  I couldn’t believe I had my daughter back so quickly. 

Napping with Daddy

I ran out to grab a cup of coffee and saw a homeless man on the street.  His eyes were hollowed with fatigue, and his hair was long and greasy.  I gave him a small smile which he did not return.  As I got home and looked in the mirror, I was shocked by my own hollowed, tired eyes.  I recognized that I did not look so different from that man.  I took a shower, drank some water, and rested on the couch. 

It took a full week for me to stop finding reasons to be anxious.  It felt like I was stuck in that mode of holding on, wanting to control everything and make the outcome okay while not having much control at all.  I had to work at relaxing and slowing down.  My mind wanted to still rush around doing small meaningless tasks to keep busy and distract myself from the constant worry.  Eventually, I sat still and let all of the emotions over the past weeks wash over me and I let myself really feel that it was over.  We were okay.  The surgeries had been as small as both doctors had predicted.  

Eyes after surgery.

Baking cookies!