Leading Up to Surgery

We checked in on April 18th, had some tests on that day and the 19th, and met with the surgeons on the 19th. April 21st was the scheduled surgery date, and they needed to monitor Mia for a few days before hand and go through all of the insurance paperwork. The 20th was supposed to be a relaxing day, but it was quite possibly the most stressful day of my entire life.

The night of the 19th was a long one. The day before, Mia had some tests scheduled for the afternoon, so the doctors made her skip her nap so that she would be asleep when they wanted to do the tests. They gave her medicine at 4 in the afternoon, but it was taking some time to kick in. Had they been willing to wait a few more minutes, she would have fallen asleep; they instead gave her a second dose of the sleeping medicine, and she was out at 4:30. She slept for 5 hours, waking up at 9:30 and not sleeping until after midnight, meaning that no matter how tired I was, I couldn't sleep until after then. I ended up getting about three hours of sleep that night.

In order to keep tabs on Mia's vitals, they hooked her up to a bunch of different devices, including a heart monitor, an oxygen sensor, and an IV drip. She was very calm throughout everything, and didn't even cry when they took blood. The nurses were all very impressed with her toughness. The hardest part about having her hooked up to all the tubes was that she still had a ton of energy and wanted to run faster than I could move the equipment.

The PHCU had a play area with a padded floor and some books for kids to read, with a mural of fish on the wall. Mia would run over to the fish and tell me which fish was Mia's fish, which was Kelsey's fish, which was Daddy's fish, and which was Mommy's fish. Something about the fish must have reminded her of us, because she was very consistent about whose fish was which. The hallway leading from the main hospital wing to the PHCU was lined with colorful decals of human feet, which Mia liked to call "duck feet", in reference to "I Wish That I Had Duck Feet", a book we own which was written by Dr. Seuss under the pen name of Theo LeSieg and illustrated by someone else. Up until the surgery date, we could go on walks anywhere in the hospital--after the surgery, we'd have to stay in the PHCU and couldn't go past the "duck feet".

When I wasn't taking Mia around for different tests or going on walks, I was hanging around the room with Mia looking to rest. This was next to impossible, as nurses and doctors kept popping their heads in the room to explain some other disclosure or give me more Japanese paperwork to fill out. Doctors even brought medical students by to see the American patient. I'm sure that it's common for the students to visit patients, but it seemed a bit odd when, on the day before the surgery, more than 25 people (not including me or Mia) all crammed into our small room to see Mia. When you haven't slept for a few days and you're expecting a day of relaxation, it's a bit unnerving to have to deal with a constant stream of people you weren't expecting to have to see.

The talk with the chief surgeon was frightening. He is a very nice man and was very eager to make me feel comfortable, but it's hard to be totally at peace when you are hearing about the dangers of open heart surgery. No matter how hard you try to push the thought of tragedy out of your mind--regardless of the greater-than-98% success rate of the surgery--it's impossible as a parent not to worry that your child might fall into the "less than two percent" of ASD surgery patients who don't make it. When the doctor explains how the heart-lung machine works, and that it will be necessary for them to physically stop your child's heart, there's nothing that can you can do to completely eliminate worry and stress.

Sparing no details, he explained the procedure from start to finish. The procedure itself would take three or four hours from start to finish, with about an hour of preparation time sandwiched around the surgery. First, they would make an incision in her chest, and then cut the sternum underneath to reach the heart. After hooking her up to the heart-lung machine and making an incision in the heart, they would search for the hole, stitch it shut, and then close her up again. He explained the risks of each stage of the surgery and mentioned that about 80% of those who receive ASD surgery require a blood transfusion, which in and of itself carried all sorts of risks.

Of course, they needed me to give my consent for everything, and I was quick to provide it. Anything that they needed to do to help Mia, I thought, was fair game. The nurses and doctors kept asking me if Stef was going to be there on the surgery date, and I kept answering that she would as long as she didn't go into labor. The last thing I wanted was for the stress of everything to cause Stef to go into premature labor again, so I did everything I could to shoulder all the stress. I even avoided telling Stef that they would have to stop Mia's heart for the procedure. In retrospect, it was silly to think that she wouldn't already know, given her medical background. The thought of Stef not being able to be with me during Mia's surgery and me not being with Stef for the birth was just too much, so I did all I could to remain positive.

The night before the surgery, Mia started a fast so that there wouldn't be any excess waste in her body, which can interfere with surgery. She wasn't very hungry for dinner that night, but I painstakingly fed her every last bite, knowing that she might not get to eat for a while.

When your daughter is going to have major surgery, it's impossible to look at even simple events in the same way. You don't know if it's going to be the last time you feed her dinner, read her a book, tickle her, sing a song to her, or go on a walk. Every moment becomes one to cherish--you just want to hold on to her and never let go. But there comes a time when you have to put her fate in the hands of the surgical staff and hope. And pray.

The night before the surgery, during our nightly family Skype call, Stef seemed a bit upset. She was having contraction-like pain and was afraid that the baby might come early. While talking to Stef, I kept a level head and suggested that she head in to her doctor to make sure that it wasn't labor contractions. After all, it's better to get sent home for a false alarm than not go when you need to and have nobody to take you. We called the clinic, and they said that, based on her symptoms, it was likely that they would admit her to the clinic to have the baby. We were crushed. I remained positive on the phone, hoping to calm Stef's nerves--but once I got off the phone, I was a wreck.

I needed someone there with me. I needed Stef there. All I could do was plead on my hands and knees that Stef's doctor would send her back home. I walked to the nurse station and fought back tears as I told them that Stef might not be able to come for Mia's surgery. Though I was terrified, I didn't want to call her and seem anxious about the whole situation, as that wouldn't exude the confidence that I was trying to project. So I waited. And waited. And waited. Finally, I got a call from Stef--she was coming home!

Excited, I informed the nurses of the development and went back to my room to get on my knees and offer thanks that Stef was OK. As I sobbed with gratitude, letting my emotions spill out, a nurse came into the room to ask me something. I sprung to my feet and hit the pause button on my prayer, and finished it after the nurse left the room. She asked if I was OK before she left, and I explained that I was just thanking God that everything was OK.

I prayed a lot that night, as well as the next day--Mia's surgery date.

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.