Mia's Surgery Date

Mia's surgery was scheduled for the morning of April 21st. Stef got a ride to the hospital from Kris that morning, then came to Mia's room to hang out before the surgery. The doctors came soon after she got there, then ushered us to a room which acted like a hub between the surgery rooms and the main hall. We took a picture with Mia, then sent her off with the surgical team, telling her that we'd see her in a while. She showed no signs of being upset, though she surely had no idea what was going to happen, except that the doctors were going to "fix her heart".

We made our way back to Mia's room, where a pregnant Stef decided to pass the time resting. With Mia out of sight and in the doctors' hands, there was no way that I would get any rest, regardless of how tired I was from not sleeping at all the night before. Wanting to find some way to pass the time, I opened my computer and called family on Skype. It was nice to distract myself with uplifting conversation with people I love.

Even when you're able to distract yourself, you can never fully get an in-progress surgery out of your mind. I tried to stay positive, but even then, I still envisioned each gut-wrenching step of the process. About 45 minutes to an hour into the procedure, I thought, "Right now, she is probably fully prepped for the start of the procedure." I prayed that everything would go smoothly in each particular step of the surgery. That the surgeons' hands would be precise. That the heart bypass machine would work properly. That she wouldn't bleed too much and need a transfusion. 5 hours of doing that can seem like an eternity.

Before the surgery, Mia and I repeatedly watched a couple movies--Mary Poppins, and My Neighbor Totoro. Both movies focus on the innocence of children and their relationship with their father. In Totoro, two young girls who live with their dad while their mom is hospitalized run around and explore their new surroundings in rural Japan, letting their imaginations run wild. Before the surgery, Mia and Kelsey would run around and play together, much like Satsuki and Mei from Totoro, albeit a bit younger. Totoro became a big part of my life while in the hospital with Mia, as she would ask to watch it multiple times each day.

"What do you want to do?" I'd ask.
"I wanna watch... I wanna wanna watch.. Totoro!" she'd reply, likely looking for some sense of familiarity while stuck in such a strange setting.

It was either that or, "I wanna wanna watch... Mary Poppins!"
"Oh, you want to watch Mary Poppins again?"
"Yeah! Mary Poppins!"

I probably watched Mary Poppins thirty times while Mia was in the hospital, and I never got tired of it. The timeless music, performances, and themes of childhood, parenthood, compassion, and responsibility resonate with me. I can relate to the banker father who needs to be more loving and compassionate with his children. Causing me to reflect on the times when I've been less patient or understanding with my kids than I should be, watching Mary Poppins gave me ample time to consider how I can be a better dad.

Both movies provided me with plenty of chances to stave off thoughts of how I would deal with the loss of a child. While waiting for her surgery to end, I couldn't help but hope and pray for a time when Mia and I could do simple things together, like watch a movie. I will never be able to watch either movie, or hear a single song from them without being reminded of the profound love I feel toward my children. I hope they do and always will know that I love them.

The doctor contacted us about an hour and a half before I had expected. Mia's surgery had finished without any complications, and she was recovering in the ICU. He invited us to take a look at her. They said she'd likely spend a couple days in the ICU before being transferred back to the PHCU room where she had been before the operation.

In the ICU, Mia was sedated on a hospital bed with various tubes going into her chest, throat, and inner thigh. They left the breathing machine on for the first while so that she could ease back into using her lungs. The doctor showed us the incision on her chest, which he had intentionally made smaller than usual, and was quite a bit smaller than I had anticipated. She hadn't lost much blood during the operation, and so they hadn't needed to perform a blood transfusion (and wouldn't need to, provided that she didn't develop dangerous levels of anemia).

Stef and I asked permission to take a picture of her, then left so that they could keep administering her post-surgery treatment.

The day before Mia's surgery, I had made arrangements to stay at a special housing place for family members of patients. We expected her to be in the ICU for two nights, the second of which I would spend at the family housing place. Making arrangements was actually quite the ordeal. They sent a representative to the PHCU before the surgery to meet with me and verify with the hospital staff that my child was actually hospitalized. After filling out multiple forms (seriously, how involved does it have to be?), the housing rep explained that I'd need to contact them again during business hours the day I was going to stay. They wanted to show me exactly how to get to the building, and weren't content with drawing a map.

The next day, I had an appointment at the insurance center in Imabari, so Stef and I planned to go back home after the surgery. The hospital staff had given me information about supplemental aid from the city for children who have surgery or disabilities, and I had to go back to fill out paperwork. My appointment was set for 1 in the afternoon, so it was doubtful that I'd be back in time to meet up with the housing people. Given that I would need a place to sleep the next night, I was pretty stressed about making it back in time.

On the way out to the train station, Dr. Fumiaki Shikata, one of the members of the surgical team, accompanied us. He wanted to point us in the direction of the family housing complex, but actually ended up taking me directly to it. I called the housing rep and explained that I knew exactly where it was, and asked them to leave the key at the front desk of the PHCU.

In the end, it was all moot. The next morning, the doctor called to tell me that Mia was recovering quickly and was ready to be transferred back to the PHCU after just one night in the ICU. Also, I don't know how necessary it was to get that aid, since Mia's hospital bills are fully covered until age 6 by our Japanese health insurance. Even though I may have wasted a few hundred yen and some time, it was certainly nice to sleep in my own bed that night.

I needed the rest for what was about to come.

The Hospital Room

The night before leaving for the hospital, I packed a large suitcase full of clothes, books, toys and personal electronics. I figured I'd have a decent amount of time for language study while Mia recovered in her hospital room. I tried to get all of the paperwork ready, but couldn't find Mia's insurance card, which I had last seen at Mia's previous hospital appointment weeks earlier. Hours of combing through every nook and cranny of our apartment proved futile, so I called the hospital help line and made sure that we'd be able to check in without our insurance card.

The next morning, Kris, our Canadian friend and neighbor, drove me and Mia out to the hospital. We took a mountain road which I had never taken before, and got to the hospital in good time. Kris held Mia as I checked in and tried to explain to the receptionist that I had lost the insurance card. As grateful as I was for Kris' help, I admit that it felt a little strange to feel everyone's eyes on us, likely thinking that we were a couple. Once everything was sorted out, they directed us to the 3rd wing of the second floor of the hospital, the Pediatric High Care Unit.

In Japan, any child's non-ICU hospital stay requires a parent or guardian to stay with the child at all times. There's no full care like there is back home. While I'm sure that helps keep costs low, it sure is nerve-wracking to feel like your own child's well-being while in the hospital is in your hands--especially when you're not sleeping or stressed out for other reasons (which I'll get to later). When I got to the PHCU, I talked to the nurse at the front desk, who offered to show us to our room.

Kris had told me that each of her children got private rooms when they had procedures done at that hospital and stayed in the PHCU. When the nurse ushered us into a room with four sliding curtains to section off "rooms", I started sweating. It got worse when one of the three other patients staying in the room, a little girl under two years of age, started screaming. I looked at the space available in the curtained-off section and my nervousness turned to despair.

There was no way that a bed large enough to fit me would fit into that space. Even if there were a way, there would be no way that I could sleep for two to three weeks with nothing more than a curtain to separate us from potentially three crying children. More importantly, there was no way that Mia would feel comfortable in such a setting.

"This will not work. There is no way. No way," I repeated to myself and Kris as I desperately searched for a solution to the plan. I went to the PHCU desk and asked the head nurse if there were any private rooms available. I was willing to pay if it came down to it. I referred to the hospital information guide that I had received at the front desk, which contained info about private rooms starting at 3000 yen per night. "Sorry, there aren't any of those left," replied the nurse. Not willing to let things be unless they absolutely had to, I mustered the best "worried" face I could and mentioned that I thought that it "might be a bit difficult" to make that room work. The nurse walked away and, after a few minutes, came back with a solution--a private room that was completely empty, but was being used for some other purpose. To top it off, it didn't cost me any extra.

Why they weren't using that room wasn't exactly clear--it's possible that they keep all the patients in the same room to make it easier for them to keep watch. Regardless, I was grateful that they were willing to accomodate me, even if it was clear that I was seen as a bit of a nuisance. After I moved all of our stuff into the private room and said goodbye to Kris, I went down to the basement floor of the hospital to get my bed.

When you stay with a patient, you have to rent all your bedding from the hospital. They won't let you bring any sort of bedroll or blankets, and they clearly make money off of the whole process. Knowing this beforehand, I decided to bring a blanket and pillow anyway, because I knew that I'd have a hard time sleeping on the bags full of rocks that they call pillows. I told the lady down at the bedding rental desk that I didn't need anything but the bed, and they gave me a six foot-long plywood foldout mat with sliver-thin vinyl facing masquerading as a cushion.

There's a problem with six foot-long plywood foldout mats with sliver-thin vinyl facing--and not just that they're as hard as a rock and less broad than my shoulders. They're six feet long. And I'm longer. Much longer. I set it up in the room and tested it to see if I'd be able to sleep on it, and immediately knew that I was in for a rough three weeks. I sheepishly asked the nurse if there was any other solution, and mentioned that I was willing to pay for anything suitable. They brought me another folding bed like the one I had, and told me that they wouldn't charge me for it. I placed them side-by-side and saw that one was about an inch taller than the other. I couldn't lay in the middle of them because of the ridge, so laying diagonally across both beds was the only option, and even that didn't seem to be very comfortable.

I brought my laptop with me hoping that I'd be able to get an internet connection. The hospital offers an free wired connection from 6 AM until 9 PM, outside of which hours you get a message telling you that you need to come back later. When I hooked my computer up, I couldn't even get the welcome screen to pop up. The room truly had not been set up for patient use, so the internet was not yet functional. They sent a networking expert down to get the room set up for future internet use. We spent about an hour trying to get the connection up and running, but couldn't seem to get the network to issue an IP address in that room.

That afternoon, Mia had some tests, including a blood test, a heart ultrasound (echocardiogram), and a chest X-ray. I had to leave to take care of that, but told them that they could work on it without me there if they so desired. When we got back from the tests, the computer was connected to the hospital network's welcome screen, ready for me to enter in a username and password. I was ecstatic to have an internet connection, but sure that I wouldn't be able to Skype, since I figured that it the hospital blocked the ports necessary to use it. To my surprise, even Skype worked.

I feel really fortunate to live in this day and age, where I can talk to and even see people that are far away as though they're right next to me. It was a life saver to be able to see Kelsey and Stef, and have them video chat with Mia. As long as it wasn't after 9 PM or before 6 AM. There must have been someone manually flipping an internet switch every morning and night, because I got the "outside of usage hours" message all the way until about 6:45 AM every day, and it didn't actually get disconnected until some time around 9:45 at night. It would have been nice to have the connection all the time, because I typically couldn't get much done while Mia was awake. When I had the most free time for study or blogging, the internet was unavailable. Still, I'm glad that I had it during the day, as it helped to keep me occupied for the first couple of weeks.

That first night was not a good night. All out of medicine for my rhino-sinusitis (Latin for "inflammation of the rhinoceros horn stuck in your face") and unable to take my mind off of Mia's surgery and the craggy "bed", I did not sleep at all until about 5 AM, when I became so exhausted from the previous day's events that I could have slept on a bed of nails, broken glass and hot lava. Surprisingly, Mia slept through the night in her unfamiliar surroundings. I was expecting a bit more resistance from her in her prison cell hospital bed. The nurses came in at 7:30 to get us up for the day. We had more tests (including a CT scan) on the docket, as well as a meeting with the chief surgeon to explain the procedure and all its possible risks and outcomes.

During that meeting, he asked me if there were any worries or concerns I had. I admitted that I was worried about whether or not I'd be able to sleep well, since the bed was a bit small and I was out of medicine, but shrugged my shoulders and said that I'd keep on keepin' on. He asked for my height and then asked the nurse to help me find something more comfortable. They pulled an electric examination table out of one of the exam room and asked if that would be sufficient. It was just long enough, quite a bit wider, and actually had a cushion. I was thrilled--it was much better than what I had before.

I felt a little guilty about asking for stuff when the other patients' parents made do with what they were offered. I apologized profusely for inconveniencing the staff, but deep down, I was glad that I went to the trouble of asking for help. It's often true that the squeaky wheel gets the grease.

Mia Admitted to the Hospital

On April 13, I got an e-mail from Mia's doctor at the university hospital in Matsuyama. We had been waiting to hear about her heart surgery, and began to worry that we might have to get it done after the move back to America. I had sent an extremely polite Japanese e-mail to the doctor about five weeks earlier, but didn't hear back. Tired of waiting, I contacted Mia's doctor at the local hospital and asked him for his opinion. He promised to contact the other doctor and have him contact me. A couple days later, I got this response: "How does next week sound?"

Just five days later, on April 18th, we admitted Mia to the hospital for heart surgery.

The few days leading up to her hospital stay were jam-packed with stress. First, I had to notify the board of education and each of my schools that I wouldn't be coming in to work for the next few weeks. Having previously verified that I had a month's worth of paid time off saved up, I was surprised when my request was met with a bit of resistance. One person even asked me why I didn't just have my wife stay with Mia. My wife. My 34 weeks' pregnant, non-Japanese speaking wife. Not likely.

We figured we'd know about the surgery at least a month in advance, since we would need multiple visits in order to store enough of Mia's own blood in case she needed it during or after surgery. The doctors, however, felt that having blood drawn in and of itself was taxing for a toddler, so they opted to just bypass that step and use someone else's blood in the event of a transfusion.

(Edit: May 24) Bear with me as I jump around over the next few entries. I'll try to keep everything in chronological order, but I'm going off of sparse notes that I kept while in the hospital.