A few weeks ago, we took Mia in to see her doctor here in Imabari. She hadn't been to the doctor for a while, but we wanted to them to take a look at her heart to see how it was doing. A chest x-ray showed an enlarged heart, taking up over 60% of the width of the chest cavity. Optimally it should be less than 50%.
Mia was born with atrial septal defect, a hole in her heart that allows blood to flow between the left and right atria. We've had to keep watch on the hole to make sure it doesn't get too big. Since the beginning, we've known that she'd likely need some kind of heart procedure before starting grade school. There are two procedures that can close the hole in the septum, and the size and location of the hole dictate which of the two procedures will be done. The first one, available to children of almost any size, is a traditional form of open heart surgery, where an incision is made and the hole is patched. The second, less risky procedure, involves running a catheter up to the heart with an expanding umbrella-like device that plugs the hole.
We stayed a third year because the doctors told us that she should be able to get the procedure done once she reached 22 pounds, which is about what she weighs right now. When we took Mia in a few months ago, they casually mentioned that she could possibly get the procedure once she hit 33 pounds. Needless to say, we were upset, since there's no way she'll be 33 pounds by the time we leave. However, they said that the hole didn't seem to be getting any bigger, so we were somewhat relieved, holding on to the hope that the hole might close on its own without any intervention.
Having not visited the hospital for a good while, we were a bit surprised when we saw the size of her heart. The doctor, fearing that the hole might have widened, suggested that we set up an appointment for Ehime University Hospital, where they did her heart exams in the past. When we went in for her appointment, we found that the hole has gotten bigger. The doctors think that it would be best for her to get the surgery in the next year or two, and unfortunately don't think it will be possible for her to get the catheter procedure.
The procedure itself takes a few hours, but they figure she'll need about 5 days of preparatory hospitalization before the surgery, and a 2-3 weeks' stay after the procedure. There's a 0.5% mortality rate in Japan for ASD surgery--we feel confident that Mia will be OK. We definitely want to get it done before we move back home, since the procedure itself would be free in Japan, given Mia's age. I still haven't lined up a job for when I return, so it's unclear how long it'll take for us to be insured and able to cover such an operation. But now that we've given them the green light on the surgery, we're faced with a few problems (other than the obvious ones associated with risks and recovery).
The first is that we still don't know when they'll be able to carry out the procedure. About a month ago, when we had the appointment, they mentioned that there might be openings for surgery in April or May, and that they'd let us know. I've e-mailed, but they haven't been able to give me any sort of detailed response--just the run around. It's doubtful that something as important as approving a heart surgery would be processed very quickly in Japan. If it takes two or three seals of approval every time I get my $10 ferry tickets, I'd imagine that it takes the approval of various doctors at several different levels of authority.
Additionally, Mia will need to visit the hospital twice to have blood taken for use in the operation--the first visit being four weeks before the procedure, and the second two weeks later. They'll also have to insert a catheter to find out if they need to take any other precautions during the surgery. The later we find out, the later the procedure will actually take place. My contract ends on July 28th or so, which is about when we'd like to head back to the 'States. We'd need her to get the procedure done with enough time to get her post-surgery checkups and medication done here in Japan.
The second issue is that Stef is currently due to give birth on June 2nd--less than three months from now. We'd prefer to not have Mia hospitalized while Stef is giving birth. This also means that I'd likely need to be the one to stay with Mia in the hospital in Matsuyama. I'm not looking forward to the idea of being away from Stef while she's close to giving birth. My mom is coming out here around mid May and stay for a few weeks. We're hoping she'll be able to help out a bit with the baby while she's here.
I wasn't sure if I'd have enough vacation time available to take a couple weeks off to be in the hospital with Mia, and my supervisor told me that they wouldn't give me any special paid leave for my daughter's procedure or the birth of my child. According to my contract, it's possible for them to give me paid leave whenever they feel it's appropriate--like they did on the island when Mia was born. However, there's just too much bureaucracy, as well as a general uneasiness for all dealings relating to foreign employees out here. Even though my supervisor would like to help, his supervisors won't let him. I don't blame them--our contract has a lot of clauses that they themselves might not have in theirs, so it probably doesn't seem fair to give special treatment to the foreigners.
In the end, it all might be moot, since I was told by my helpful and supportive supervisor that I'll actually have my PTO clock reset in April, replenishing my balance of 20 days' worth, in addition to the 10 or 12 unused days that I'll be carrying over. When it's all said and done, I'll have enough PTO left that I could take a whole month off if I so needed. That was a pleasant surprise, though I'll be careful not to abuse the privilege of having so much PTO. The last thing I want to do is make life inconvenient for my coworkers just so that I can be comfortable. That said, I'll use what I need to use.
These last few months are going to be pretty busy. We're certainly not taking Mia's condition or the surgery lightly. But we feel good about her getting the procedure here, as long as we can work out the schedule.
Mia herself seems so happy, and she's developing so quickly. She shows an amazing capacity for music and language--she's been singing her ABCs for months, and she's able to string strikingly complex sentences together. She and Kelsey like to make up songs, improvising melodies and creating their own lyrics to narrate what's going on around them--something that I did while was growing up (and still do). Naturally, Mia's also quite a handful, being in the "terrible twos" stage and all. We feel very blessed to have such cute little girls in our family, and look forward to watching both of them grow up together.
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