Muscle and Blood and Skin and Bones

Last week, the kids and I went to Okayama for Theo's semi annual round of checkups. The appointments were pretty straightforward with no surprises or invasive tests. It always seems like a long trip to make for a few 10 minute chats with doctors to tell them that nothing has changed since they saw him last. I guess it is better to be safe than sorry though. The only glitch in the day was when I got on the wrong bus at the train station. The bus that goes to the hospital does not have a readily obvious bus number or show the name of the hospital anywhere on it. I usually ask the bus driver to confirm that it is the right one but I was feeling daring last week and just hopped on the one that pulled up at the appropriate time. About 15 minutes later I knew that I had made a mistake but luckily the bus went in the right direction and since the hospital is fairly large and looming I was able to see it a kilometer or two in the distance. I am never too annoyed about a bit of unexpected exercise. All in all, I was much relieved that it was nothing like our last visit.

Our last trip to the hospital was in February and a total disaster. The day started off on the wrong foot. Shortly after arriving at the hospital I realized that I hadn't to brought quite enough money on my person to pay for the hospital bill, meals, and transportation back home. I know this might sound neglectful, but I am still getting used to a society where cash is used for everything and virtually no one accepts anything else. Also, since I had left Hiroshima I couldn't use my bank book to get any more cash. As I waited for nearly three hours in the waiting room to see the doctor I tallied my resources and realized that I could, just barely, pay the hospital bill and the train fare as long as nothing unexpected cropped up and we didn't eat anything. Theo, who almost never has an appetite and only eats when absolutely necessary (i.e. when we force him to) didn't really seem to care that lunch time came and went. I, on the other hand, was got progressively crankier as the day wore on.

Our last appointment for the day was an MRI to check Theo's spine. Because he can't stay still enough in the machine to get good photos, they needed to sedate him. In Canada, this meant that they put in an IV, gave him some kind of milky looking substance which knocked him out almost immediately, but when the IV was removed afterward he woke up within a few minutes groggy but functional. At our appointment in December, I was informed that they never used IV sedatives on children in Japan because they were much too strong. They instead gave him some orange flavoured syrup that was supposed to knock him out in 30 minutes to an hour. An hour came and went and instead of Theo getting sleepier, he just got extremely stoned. It was hard not to get irritated at him as he loudly demanded irrational things, tried to remove all of his clothing because he felt too hot, and insisted on walking around even though he kept on tripping and falling all over the place. At one point I thought he might settle down if I brought him outside into a courtyard with pretty mini-lights strung all over the trees. Instead he stared at it in wide eyed amazement while his head wobbled around and said: "wow, mommy look at all the pretty, pretty lights!". By the two hour mark the doctor was amazed that he was still on his feet and conscious. He told me that I would have to brig Theo back in a month so they could try again with a larger dose of sedatives.

Dejectedly, a completely high Theo and I made our way down to the reception to pay our bills and hopefully have enough left over to pay for a train ticket home. As I was standing in line to hand in my paperwork, Theo made his clumsy way to one of the chairs and promptly fell into a deep sleep. I ran back over to the doctor's office and he was able to rebook the MRI appointment he had just canceled. Theo was whisked in for pictures and out 10 minutes later. Unfortunately, this meant that I had to haul a completely unconscious, 20 kg sack of potatoes onto the bus and then on to the train back to Fukuyama. The good news was that I eventually did manage to haul his limp body safely back home and even had a little money left over once we arrived!

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!

Bill and Ted's Bogus Journey Part 2

 The first two days that Theo spent in the hospital were extremely busy for us. We were throwing a going away party that week, and though we were tempted to cancel it, we realized that might be more work than just going through with our original plans. All of the food had been bought and not many people knew that Theo was in the hospital, so it would have been a whole day of nearly identical phone conversations to call the whole thing off. The party ended up being extremely successful and fun: the decorations were fantastic thanks to my mother-in-laws magic, the food was good, and I think everyone had a great time.

Meanwhile, at the Children's Hospital, Theo was still not recuperating. His temperature was spiking every 4 hours and he was not eating, drinking, and had very little energy. On Friday morning he had an ultrasound of his kidney which revealed that it was actually infected. The antibiotics didn't seem to be doing a thing, since his fevers kept coming back. Finally the doctors decided wait until Sunday evening to see if the antibiotics would begin to work, and if not they would put a tube in through his back, into his kidney which would have to remain there for months to allow the buildup of fluid and pus to drain. After a few months they would remove the tube and there was also some talk of removing the upper portion of his kidney at that time. Obviously, we were really hoping that the antibiotics would kick in soon.

Finally feeling good enough to enjoy the toys

The weekend wore on and Sunday evening drew closer with Theo not doing any better. Finally, when I had resigned myself for the worst, his fever didn't return. The antibiotics finally started doing their job and Theo started perking up more and more. Over the past few days he has started eating more and actually wanting to run and play.

The last we heard, he can come home this evening! After almost two weeks in the hospital, and Dustin's departure date looming closer, we are really relieved that we will be able to go home soon. It has been hard balancing work, Theo, and all of the extra stress of packing and moving but I am sure that Theo will be the happiest one of all when it's over.

Thanks everyone for your thoughts and prayers while he has been in the hospital. In the end, everything worked out so much better than we expected!

Playing with William

Bill and Ted's Bogus Journey Part 1

We have had a few long days and sleepless nights since my last post. Theo had been sick all last weekend when we were moving (as we all were) but didn't seem to be getting better. I attributed his intermittent fever, irritability, and fatigue to the really bad cold that he had caught last Friday, but by Tuesday I was beginning to get concerned when he got a fever again and was sleeping 16 hours a day.

I brought him into the Children's Hospital Emergency in Winnipeg on Tuesday evening because I was beginning to suspect that something more important, like a urinary tract infection, was lurking under the congestion and cough that he had. In retrospect, I should have suspected something a couple of days earlier and brought him in, but being super sick myself and also trying to pack and move the whole house, I suppose I was not being as intuitive about his sickness as I could have been. I thought that the worst case scenario would be a UTI, but since he hadn't once complained about pain while peeing, wasn't going to the bathroom any more than usual, or any other obvious symptoms, I really thought it was not the case. Once at the hospital, they took a urine sample and confirmed that he did in fact have a UTI.

Theo enjoying his brother's company at the hospital

As I wrote about in a previous post Theo's kidney is an object of interest for many a doctor. He only has one remaining kidney and only half of it functions properly. As soon as it was discovered that he had a UTI, the doctors went into a tizzy because they didn't know whether the infection had spread from his bladder to the kidney, and if it had, would the remaining functioning part of his kidney be completely damaged. They promptly hooked him up to an IV of some pretty potent antibiotics, which sounds much easier than the 1 1/2 hours of multiple nurses, numerous collapsed veins, and screaming which was actually involved before they managed to get the IV in properly.

Every doctor, resident, and student on the floor then decided to show up at intervals poking and prodding Theo and each one asking me to tell a detailed story of his life. I started getting a bit annoyed since it was midnight at this point and they were asking pointless things like "what did you crave during your pregnancy with him?". He eventually fell asleep on the bed in the ER in spite of people poking him every 5 minutes and we were finally admitted to a room in the Children's Hospital by 1 am. Dustin "slept" in his room the first night since I had to return to William who was being watched by my mother-in-law.

So bored

That long drive out of town to my in-laws in the dark was strange since it was the first time I have seriously pondered the fact that I am the proprietor of the only kidney available for transplant in our family. Theo and I share a rare-ish blood type and unfortunately are the only ones in our family with it. The test to show if his kidney was actually infected would take another 48 hours, and if it was, it would take another day or two to assess how much of his kidney was seriously damaged by it. I could feel the phantom scalpel tickling under the ribs on my back while I tried to prepare myself mentally for the possibility of having an organ removed on short notice.

To be continued...

Farewell to the Yakkan Shōmei

We have finally mailed off the forms which will allow us to bring medicine into Japan, or the Yakkan Shōmei.  It is sort of an import certificate which consists of three forms and took seemingly forever to fill out. It is only necessary to fill out the Yakkan Shōmei if you are bringing in more than a months worth of perscription medication, more than 2 months of non-perscription medication, or more than 4 months worth of vitamins. A couple of weeks ago when we were in the U.S., I stocked up on fairly ridiculous amounts of acetaminophen, ibuprofen, and vitamins to last us a year or more, so I needed to fill out the Yakkan Shōmei. I normally like filling out forms and surveys, so it was mildly enjoyable at first, but by the time I got to the third form (Product Explanation Form 6) I was not having such a great time.

The product explanation form requires you to report the name of product, name of manufacturer, country of origin, all active and non active ingredients and the quantity of them contained in the product, what it is used for, and a complete description of what the medicine and the container it comes in looks like. This was fairly easy for the gigantic bottle of ibuprofen and acetaminophen, but when it came to multivitamins it was agonizing. There are 30+ overly long ingredients in them and very quickly I was cursing the decision to buy separate men's  and women's vitamins as well as infant and children's vitamins. I also ran into a mystery when trying to report the name of manufacturer and originating country of the vitamins and painkillers I bought in the U.S. Everything I bought in Canada stated the manufacturer and country in which it was made very clearly on the side of the packaging, but for the American medicine, there was absolutely none of this information. I called the 1-800 number on the side of the bottle thinking that it would be an easy 5 minute phone call, but 30 minutes, 2 different people, and a supervisor later I was informed that the information I requested was confidential and they couldn't disclose it to me. I was pretty incredulous that they were not required to give me that information and I really despise how these companies are so obsessed with covering themselves at all times. It makes me feel as though they are doing something illegal, like using powdered baby bones as a filler, or manufacturing them in sweat shops if they are not willing to be transparent about simple information. Dustin's theory was that they were afraid that I might find out my generic acetaminophen tablets were in fact made by the same pharmaceutical company that produces Tylenol and my generic vitamins were made by Centrum. I suppose the name brands might lose their edge if that was the case.

Ten pages and all of my patience later, I finally finished the product explanation form and we were able to mail the Yakkan Shōmei off to CLAIR(Council of Local Authorities for International Relations). I really hope that filling out the forms was the worst of the hassle and that I won't have to think about it again until we reach Japan!

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

Vaccinations

Something else that we have put a  lot of consideration into is vaccinations for William. The US and Canada have very similar immunization schedules that start at 2 months of age. The first few shots (DTaP, Hib, IPV, Men-C, and RV) are given in 3 parts at 2, 4, and 6 months of age. The pneumococcal vaccine is given in 4 parts starting at 2 months. Since we will be leaving when William is only 5 months old, he will not be able to finish any of the series that we would start here. We have realized that we only have 3 options:

1. The boys and I will stay an extra month so that he can finish his first sets shots

2. We will leave when he is 5 months old, as originally planned, and have 1 month to figure out how to obtain the last shots he needs in Japan at an expat clinic.

3. We will not do any of his vaccinations in Canada, and begin him on the Japanese schedule once we arrive.

I really don't want to wait an extra month in Canada since that will actually be 2 months after Dustin leaves. Since our house will be sold by then, I will have to stay the extra time with my in-laws and spend every waking moment making sure that Theo does not break the multitude of knicknacks and tear their house to pieces.

I also don't relish the thought of running around trying to find Canadian vaccinations in Japan with only a one month time limit. I have read that getting imported shots at an expat clinic is super expensive, since it would not be covered by Japanese healthcare. I have no idea how expensive though, because every forum and website I have read fails to mention exactly how much they paid.

I have been reading up on the Japanese immunization schedule in the past month. There are a few differences from the Canadian schedule, the most important being the use of a non-attenuated or live polio vaccine (OPV), they do not immunize for mumps, and they immunize for tuberculosis (BCG). At first I thought it was a bit sketchy that they used the live polio vaccine compared with the inactive polio vaccine (IPV) that we use in the west. The live vaccine can actually cause someone to contract polio and there have been multiple cases of vaccine associated polio paralysis. After reading about it a bit more though, I realized that the US and Canada used the same OPV until the 1990's and only then switched to IPV. I guess if virtually everyone I know, including myself, got the live vaccine, and no one I know has contracted polio, I shouldn't worry about William. They also do not vaccinate for mumps like we do in the west. Mumps does not really affect young children too badly, but it can cause infertility if adolescent males contract it. So we can worry about that one in the future.

Japanese BCG vaccine

The last notable difference with their immunization schedule is that they vaccinate for tuberculosis instead of just testing for it with a mantoux like we do in Canada. The BCG vaccine uses a creepy looking 9 needled puncher device, leaves a scar, and makes you test positive on a mantoux. The scar isn't a big deal, I am sure William wouldn't be upset about an interesting arm scar, but testing positive for TB when you don't have it is annoying. My dad tests positive on a mantoux and has had to always have chest x-rays instead.

After thinking about our options and talking with our pediatrician, we have decided to hold off on starting any vaccinations in Canada and start him off the Japanese way. Hypothetically, he will be protected by my immunity anyway. I suppose that I will need to get my hands on  a Mother and Child Health Handbook (boshi kenko techo) when I get to Japan.

 We have not thought about this issue with Theo too much. At three years old he only needs two shots sometime between the ages of 4 and 6. We can always get them while visiting back home at some point in the next 3 years.

    

Doctors

Theo's CT scan (February 2008)

Last week I made appointments for everyone to take advantage of our wonderfully free medical system. One of the issues with moving to a foreign country with children, especially a child like Theo who needs more than just basic medical attention, is the need to find doctors fairly quickly after you arrive. Thankfully, Dustin and I are very healthy individuals who rarely do risky things that might land us in the hospital or doctor's office. Unfortunately, our children will more than make up for the rarity of our visits. In Canada, Theo sees a nephrologist, urologist, and neurosurgeon on a yearly basis to check up on various conditions he was born with.

Waiting for Theo to rouse from anaesthetic (May 2008)

He has never been actively sick (other than the occasional cold), but he still needs a yearly kidney ultrasound and blood tests to make sure that everything is working at full capacity. We are hoping to extend our Canadian medical coverage for a year so the kids and I have the option of coming back next summer for a week or so to visit family and see all of his doctors. I will at least have 10 months after we arrive in Japan to explore the medical system and determine exactly how much it would cost for Theo's various appointments and tests. I am almost sure that it will be cheaper than the cost of plane tickets back to Canada, but we will see how desperate I am to visit family by June of next year. Though William is lower maintenance than Theo medically, he will only be 5 months old when we arrive and will have quite a few check ups ahead of him for vaccinations and such (more on vaccinations next time).

Sleeping after Theo's last and hopefully final
surgery (December 2010)

I am hovering in a strange balance between being daunted at having to dive into a new medical system and deal with Japanese doctors when I will speak practically no Japanese and being excited by the challenge.