First Encounters

By the time we left Canada, I was quite comfortable with the medical system. After having checkups, one trip to the emergency room, two pregnancies and births, and one child with special medical needs, there was rarely anything that surprised me. I never had too many complaints about the care I received, but it was really all I had ever known.

Since arriving in Japan, I have been really fortunate in finding doctors and getting Theo's medical records translated. Through our neighbour, we were able to meet a pharmacist that would like to be an English/Japanese medical translator. She has been overwhelmingly helpful in getting the reference letters from Theo's Canadian doctors and a medical history translated into Japanese. She was also able to help us find a hospital in Fukuyama with a pediatric urologist and nephrologist and set up an appointment.

Theo looking into the middle distance

Theo's visit to the hospital was on Monday. We were able to visit the doctor, who spoke impeccable English, have an ultrasound of his kidneys, blood tests, and a urinalysis. The tests showed that there has been no change in his kidney function since Canada, but the doctor informed me that he would like to refer Theo to a larger hospital with a more specialized pediatric urology and neurosurgery department. He was concerned that since Theo has a very rare kidney and spinal malformation, that they would not be able to provide the most comprehensive care for him here in Fukuyama. We are being sent to Okayama National Hospital which is in the prefecture directly east of us. It is actually extremely close to us, only 18 minutes by shinkansen. I was afraid that he would refer us to some place much farther away, like Osaka or Tokyo, so Okayama sounded great to me. Hopefully they feel confident taking Theo's case and don't just refer us somewhere farther away. Our appointment  is on December 13th, and our pharmacist friend is being nice enough to join us there.

I have been to at least 20 appointments in Canada just like the one we had on Monday, and here are the major differences I observed:

1. It takes months before you can get an appointment in Canada. Unless it is an emergency, it is extremely common to get an appointment to see your doctor anywhere from 2 - 6 months in the future. You get very used to booking appointments months in advance. Here, I was given the option of seeing a doctor within a week of calling.

For lack of a relevant picture, here is a cute one of William

2. In Canada, it takes at least four months before you get an ultrasound. Your ultrasound is taken by a technician, interpreted by some doctor, and the results and images are then sent to your actual doctor. It takes about 2 weeks before you get your results. They will only speed up this process if it is an extreme emergency. In Japan, Theo was given an ultrasound, by the doctor, at his appointment, and I was told the results right away. Needless to say, I was impressed.

3. Health care is free in Canada, but prescriptions are not. For Theo's appointment on Monday, I paid 500 yen ($6.50 Canadian) because he is covered by National Health Insurance and Infant Medical Expense Assistance. Prescription medicine here is free though.

4. The doctor I saw on Monday was incredulous that the doctors in Canada had never done an MRI of his kidneys and that the only CT scan he has ever had was when he was 2 months old. It seems that doctors here are much more willing to preform every test available to better monitor your health.

All in all, I was very pleased with my first encounter with the medical system here. Even though Theo's doctors in Canada were very competent and caring, I think in the long run he will receive better care in Japan. Lets just hope that our experience in Okayama confirms this!

Come What May

I brought Theo to 2 of his 4 doctors appointments this week. I booked them early enough so that there would be time to run any tests needed before we left and gather his medical records from everyone.

We met with the pediatric urologist on Tuesday, who was her typical pessimistic self. She has a tendency to paint a very dire picture of Theo's physical health, as if his urinary tract is is a ticking time bomb and she is waiting for the explosion. She is most likely right, but it is fairly depressing for me to think about, and there is not much we can do but wait so I usually try not to dwell on it.

For those who are interested, he had severe bilateral hydronephrosis before he was born which led to the complete damage of his right kidney and half of his left kidney. It seems to have gotten a bit better since he was born, or at least his remaining bit of kidney hasn't declined in the past 3 years. Unfortunately, kidneys can't repair themselves once damaged, and about a year ago Theo's body completely reabsorbed his non-functioning right kidney. We thought that this was really creepy, but it was actually the best outcome, since doctors don't like to see completely functionless bits sitting around in your body for too terribly long. The weird part is that it happened in a three month period; it was there on one ultrasound, and then it was missing.

The second appointment this week was with the pediatric nephrologist. Up to this point Theo's remaining bit of kidney has been keeping up with all its necessary blood filtering duties. This time though, the bloodwork shows that he has a developed metabolic acidosis because his kidney isn't able to produce enough bicarbonate (HCO₃^-) to buffer the blood properly. It also showed that he is borderline anemic because the kidney is not producing enough erythropoietin, a hormone that triggers bone marrow to produce red blood cells. This news was a bit of a blow, since it shows the very first signs of kidney decline. Today I will start him on a blood buffering medication that he will need to take for the rest of his life.

I really enjoyed taking physiology classes in university, but since I was in zoology, I really only ever studied how invertebrate and lower vertebrate bodies functioned. In the past 3 1/2 years I have become more interested in human physiology, but though it is interesting, I really wish my own child was not the motivation to learn. The appointments this week have left me feeling pretty deflated and disheartened, but I always feel that the best way to deal with this is to focus on the present. If I allow myself to wonder about all of the future possibilites, I get very anxious. Do what is best for him today and let tomorrow alone until it comes. I am sure that many parents who have a child with chronic kidney disease don't get 3 1/2 years of stable kidney function to wrap their heads around the situation, so I suppose we are blessed in a way.

Wondering what the future will hold