Sleep Crawling

From BambiniPt2

Nico first Crawling Video
Nico mist facial

Nico has been sleep crawling the last couple of nights. The first thing we know is when the breathing detector alarm goes off because he is no longer on the bed. It is dark in their room and as we slide the door open, light spills onto the floor to reveal Nico frozen in motion like an escaping convict hit with a searchlight. Its a hysterical moment... Baby break out.

After a week of very sleepless nights and more baby snot than I care to think about, it seems their colds are getting better. The current Indian summer with temperatures in the mid 90s doesn't hurt either.

After a few days the Similac recall hit the news and we wondered if there was a connection. Since the taste of baby powder with bug guts additive is probably reminiscent of pure bug guts you get familiar with on a motorcycle, I decided to become the food taster and ya know, I think I fell more energetic like my hairdresser said. Best of all I know have a legitimate title for the deposits on my waist... baby fat!

First Cold, Car Seats & Health Care Reform

From BambiniPt2

Most babies get their first cold before their first birthday, and it seems our boys are no exception. Thankfully it does not seem to be too bad. They are ok during the day, but at night they are blocked up and wake up every hour crying. After three nights of this I have given up trying to keep them from waking Barbara, and just give her one of them so I can get the other back to sleep.

I rushed out and bought another humidifier as the moist air makes it easier for them to breath. Babies don't know how to breath through their mouths so they get very freaked out when their noses don't work. This is our second humidifier. The last one smells bad and probably has mould growth in it. They are virtually impossible to clean properly and all the water additives and silver anodes don't seem to do the trick. The only solution is to use distilled water which is totally impractical.

We have been having a big debate about PJs for the babies and this week we are trying out two flavors, both with long sleeves. One his a long tube and the other completely encloses their feet and zips up. They always seem to have cold arms or legs in the morning and any blankies just get thrown aside as they toss and turn.

Nico is getting heavy and he is quite strong. Luca has a vice like grip and can case pain if he grabs the skin on your forearm for example. They are growing so rapidly we are afraid they will no longer fit in the car seats, so this week we worked on buying them new seats.

The Britax model has been on the market for many years with excellent reviews. Luckily there are many families in the bay area selling car seats so we started looking for one used seat to see if Luca would like it.

It seems that car seat manufacturers have colluded to propagate the myth that a car seat has a shelf life of only six years. The carseat "lifespan" was touted as being ten years, but I guess someone realized that a few extra billion dollars could be extracted from the market by changing this to six years supported by "fear of death" marketing with "official" statements that the seat is "not safe" after six years.

This is complete nonsense of course. Just to check, I thought it might be amusing to start a thread on an engineering forum to see what people in the industry had to say. Generally speaking polypropylene has some very long lasting durable qualities, which is why they made the car seat out of it in the first place!

One of the major advantages of polypropylene is its complete resistance to attack by environmental stress cracking (which causes other plastic to become brittle and crack). The principal problem is solar radiation (UV) from sunlight (p133). The surface deteriorates by crazing to a chalky friable material of very low strength. In mouldings, the surface can be scratched away and bleaching is visible.

This is all good news for car seats because they are mostly completely shaded from sunlight. They sit with their back against the seat and the front is completely covered with a fabric seat cover. Some small unimportant areas of the base may be exposed, but if they were effected it would be immediately obvious.

Now why am I bothering to explain all this? Because people believe this industry BS, and when you mention car seats they get this intense stare as they repeat the same thing every time: "We bought new car seats. Our babies safety is worth it." This is exactly what the manufacturers want the public to think.

In fact, the statistics show that this scaremongering has nothing to do with the reasons infants are killed in cars every year.

"In the United States, more than 2,000 children under 14 years of age die each year in vehicle crashes. Most of the fatalities happen because the children aren't secured in specially designed car seats. Instead, they are strapped in the wrong kinds of seats...or they aren't wearing any restraints at all. Child seats are also often incorrectly placed rear-facing in front of air bags. In 1997, six out of 10 children who were killed in vehicle crashes were unbelted."



Notice nowhere is deterioration of plastic leading to failure mentioned. This is because it is JUST NOT AN ISSUE. In fact you could place the child in a bucket so long as it was secured properly in the car and he would probably survive just fine. Car seats do not go flying down the tarmac and impact solid objects. The just provide a seat to restrain the child in for goodness sake.

Fortunately for those of us that are able to discerne these simple truths, this leads to a large supply of perfectly good car seats that nobody wants. Since people believe that a car seat is useless after six years, and junior is going to need it for about four years, they all look for a 2yo seats. Seats that are four or five years old are virtually worthless in the market.

Just about every website now quotes the shelf life number of six years so it has become a self perpetuating "truth". About the best they can offer as a reason is the the belts and buckles wear out. This is even more insulting to the intelligence than the plastic degradation (which I have not seen mentioned).

Safety belts and buckles have to be about the most rigorously manufactured items in any vehicle. They have triple stitching everywhere and are made from materials that are designed to never fail. They are not affected by UV or heat or freezing or water or any elemental force. I have actually used these belts to tow vehicles. I could probably tow city buses when they break down for the next twenty years with any child car seat safety belt, and this is what they allege is going to wear out? Its absurd.

Wear on this kind of belt is visually evident. There is obvious fraying. Buckles are engineered very well in the first place. How are they going to wear out? Is the metal going to be worn away by the friction or something. It's just ludicrous rubbish.


So anyway, we picked up two very nice examples of these "worthless" car seats this week for $40 (they retail for $280 + tax). We actually paid more for two brand new seat covers that we did the seats. When the original covers were removed, a perfect car seat was lurking underneath. It will probably be just as good in 60 years.





Today the first part of the US health care reform took effect and.... the insurance industry completely ignored it. This is an industry that takes real money from millions of people and promises services that they employ an army of people to deny you when you need. This is true of car insurance as much as for health insurance. It is the business of scam artists in suits that spend more time and money lobbying congress to make .living without their "products" illegal than they do providing the service they claim to sell.

The original concept of insurance, was as a general fund for securing provisions to widows, sisters and other females related to soldiers during the Napoleonic war. It was started in March 1812 by a number of "eminent Scotsmen" gathered in the well established Royal Exchange Coffee Rooms, and called; Scottish Widows Fund and Lif Assurance Society.

Since then, this concept has been twisted, manipulated and distorted into the joke that passes for insurance "industry" today. This is a place where teams of Harvard MBA's spend the bulk of their careers working on "products" designed to separate people from their money with the promise of "coverage" that to actually benefit from, requires hours and hours of reading fine print to determine how to get a simple referral.

Then when you actually make a claim, whole departments of employees spend their days finding ways to deny the benefits you paid for and desperately need. Instead, your premiums have essentially paid the salaries of the people who are working to deny you the coverage you thought you were paying for.

This situation is not new, or limited to the US. This country just happens to have the most egregious examples of desperate people being denied life saving treatments, coupled with blatant industry wide predatory practices.

Today we were supposed to be able to change insurance plans. The US government wrote legislation that mandated change. The insurance industry has done nothing except spend our money trying to fight the change, spreading misinformation and hiking the rates by as much as 30% in a political move to blame the administration for the hike!

In fact a misbegotten last-minute bill using exactly the insurance industry's language on actuarial justification passed on the last day of the session. And an effective bill to regulate health insurance didn't. You could almost predict the votes by how much each legislator got from the $800,000 the insurance industry recently contributed in the state Senate.

I have called many insurance agents trying to find someone that can write us a policy. Not only do they have NO IDEA if this is possible, they say there is "confusion" in the industry right now.


Contacting people in hospitals is hard. It took a week to get the Dallas administrator to respond and the news was not what we expected. I had asked her to confirm the rates that the Doctor told us. Somehow the facility fee was double. When I asked about this, they said they were trying to negotiate this with the hospital.


Meanwhile, since it may make sense to go to San Francisco, I have been attempting to find out how UCSF has the gall to charge $5500 per hour for an operating room that the insurance industry "negotiates" for somewhere around 10% of that. The answer it seems is a national disgrace recently highlighted in a recent 60 minutes story.

I called the billing department and after being transferred to Siberia and back, got a monotoned Asian woman that was obviously the designated bearer of bad news for the faceless hospital administration. She told me that this rate was in fact 40% off the actual rate (which would make the actual rate $18,333.33, an improbable
number if every I there was one).

I asked her if she could give us the "MediCAL rate". This would be a fair
price negotiated by the industry. She said she could not. So I asked her why this rate was so high? She had no answer. I explained that other facilities around the country charge self pay patients between less than 1/4 this rate. She simply said that this was "real rate" that other people had paid.

Next I asked if this was an example of price gouging reported in the 60 Minutes show and read her the quote: "Basically, hospitals charge uninsured people four or five times more than what they would accept as payment in full from an insurance company. Simply put, it's price-gouging,". There was no response.

Finally I asked her why a hospital would impose such a hardship on the uninsured?
you would think they would be the group that was offered a lower rate than
the insurance industry. No answer. I pointed out that people that
come into the emergency room and cannot pay inflated bills are often offered
steeply discounted prices. I asked her if this was possible. You can guess what the answer was.

After I got off the phone with her I wrote to the Doctor again and asked him if there was anything that could be done or if we could perhaps use a different facility? I got the customary one line answer with no preamble whatsoever: "you can check with Children's hospital of Oakland". You would think this man has a tooth extracted for every word he uses in an email. I have never seen anyone this economical with words. So I called Oakland.

I had along conversation with the pediatric urology administrator who loosened up after a few minutes and told me things that "I didn't get from her". First she pointed out that Oakland sends its billing through UCSF and so their rate is whole $1000 cheaper. Some grey little administrator probably finds that amusing. After that she revealed that this practice is common and many people suffer from it... except of course other doctors dentists and hospital employees and their friends and families.

She then revealed that the Doctor is the one that sets this pricing and he has the power to set it at some other level as a "professional courtesy" for another doctor for example. I could appeal to this Doctor again and beg for a courtesy, but I don't know why he would extend this to us.

So I asked her if she thought our state senators office might be able to apply enough pressure to the hospital administration. They can write letters asking for explanations and apply the scrutiny of a US senator. She applauded this idea (but she didn't say that) and said anything like that would help everyone.

So next I contacted Barbara Boxers office. A very eager young man responded immediately and sounded like this was just the kind of thing he would like to sink the teeth of her office into. He wanted me to fax him release forms so that he could begin gathering information and get to work.

Since I don't think any of this is going to resolve itself in the next four weeks, it looks like we are going to have to scrub his operation for now.

Crawling

From BambiniPt2

Nico is crawling. he went out of the nursery, down the hall and into the living room before he collapsed in a heap. We are not sure if the helmet is weighing him down or if it is just exhausting. Luca is not quite there yet.

This has put added pressure on us to move forward with his surgery. My trip to Dallas was a long two days of flying, and a day with a short meeting sandwiched in the middle. It was a lot of effort for such a short meeting, but when after five minutes with this surgeon, I finally understood what he was all about.

His staff suggested I paid $180 for the "consultation" I suggested that spending $1000 to get there was probably enough. The Doc was to the point so I suppose he was not thrilled at being questioned about his work, but as i explained, I am leaving no stone unturned for such an important procedure. There is really only one shot at getting it right. Any follow surgeries will be to repair the first.

He explained a technical aspect of the procedure he invented (actually a variation of a basic procedure). His procedure is not officially named after him. He recently published his results. He has performed this procedure on 500 consecutive patients in the last ten years. His complication rate was 4%.

He explained that there is a checklist he goes through once the patient is on the table and if all the criteria are present he can proceed with his procedure. If not he has to break it up into two steps, but that is rare.

I brought with me about five pages of text and illustrations photocopied from some medical textbook that our Kaiser Doc had sent us. I showed these to him and asked what he thought. He immediately recognized the procedures and declare that he had tried these years ago and they had an almost 100% complication rate. Then he said "you can quote me on that".

As I asked a few more questions about the procedure he finally declared "this is just really hard to picture until you see it in front of you on the operating table. I studied it in medical school and still didn't get it until I saw it for the first time"

However, I finally did understand why he does what he does, and why he always does it. Initially it was not known if his technique would impact healing, so he began to keep careful notes and do extended follow up with patients to find out. He kept all this data and has published it. In fact the point of publishing the data was to answer that question.

Finally I asked him about the anesthetic. He said they do put a tube down his throat because otherwise the anesthesiologist would have to hold the mask in place for three hours and if he needed to do something else he would not be able to.

This sounded a little like justification for "we do it the way that makes our lives easiest" but he assured me that even though the tube has a fairly severe impact on adults, it is not like that for infants. Hmmmm. I was not convinced. I wondered if this was a case of a "physician minimizing". I decided I needed to speak to an anesthesiologist next.

So with this Doctor we get a procedure that has been tried and tested and the surgeon that invented it and has his reputation is tied to it's success. I don't think you could ask for better. We have to take on faith that the anesthesiology will not mess up his throat. The downside is we have to fly two infants to Dallas and stay for a week or two.


By contrast, we have been waiting for two weeks for a cost estimate from the prestigious UCSF. I finally ran out of patience today and called again to be told the person that handles this is on family leave and the guy that is filling in is "swamped". I wrote to the Doc again and asked as politely as I could if there was anything he could do to help, 20 mins later a PDF estimate arrived in my inbox.

Upon opening it almost had a heart attack. The surgeon fee and anesthesiologist fee were about the same as the Dallas Doc, but the "Facility Fee" was 3x higher. Considering Nico will not be staying overnight and the operation will be three hours, I can see no way to justify this. I replied explaining that this is coming out of our pockets, and asked for something more reasonable. Since this is unlikely, our decision is probably made for us.

This Doctor is very well known and mostly uses the same procedure. He has less investment in the outcome as he does not publish his results (he has attained all the status he needs as a professor, research director and lead surgeon of a prestigious hospital). He claims he uses a simple mask to deliver the anesthetic.

Although this location is more convenient, everything is difficult and there are layers of incompetence at this large, old "facility", and their fees are outrageous. We have to schedule this soon so we have to decide.

I wrote the first "demand letter" to Kaiser this week. I can't wait to see what that yeilds. It was fairly general and made the main point in our argument; that they do one or two of these per year, and the specialists do 150! I saved the complication quote for the next one which will enumerate the list of reasons we are not willing to let them experiment on our son. Sheesh. Most parents would never know until it was too late.

Teeth

From BambiniPt2

Videos:
Tickling Chairs
Nico Chair Assault

Teeth are supposed to appear around seven months and after a long period of teething, there are two lower teeth in Nico's mouth. We are all very excited that our baby is now able to leave teeth marks in everything he bites (including fingers, documents and mama's neck). Luca has a mode we call "shark Boo" where he just opens his mouth like Jaws, and lunges at you. Its terrifying.

The last few weeks have been a big emotional roller coaster. I think its just the final throes of acceptance (that our former lives are over, dead, no more) and that we now are reduced to the personal servants of two 7 month old infants. I caught Barbara staring off into the distance this week and dared to enquire what was going on? She asked "are we ever going to be able to watch a movie again?"

I did my best to re-assure her that by the time we can watch a movie again our eyesight will be gone and we wont know what we are looking at. For some reason this wasn't as appreciated as I had hoped. It's a HUGE adjustment, and doubly so for Barbara who also has the hormone changes in her body to deal with.

A bad night is when Nico wakes up teething and will not go back to sleep. Then I have to walk around and rock him for a minimum of an hour. His record so far is 90 minutes. At 4am that is very taxing.

Barbara found a great bouncy seat this week for $9 here in Los Altos. Whats amazing about that is, everyone that comes here to sell anything usually doubles the price. It has some cool moons and saturns on it that the babies try to scrape off. I have bought one or two at BabiesRus for $45, but they are just cheap Chinese crud marked up 2000%.

We are now looking for car seats to try to help with Luca's phobia of traveling. We suspect it has more to do with being strapped in the seat than riding in the car. We are planning to go to Los Angeles for xmas so we need to figure out something that will work for him.

Second Opinions

Today we drove Nico to San Francisco. He had a great time in the back with Mama. We had an appointment (finally) with one of the best surgeons at University College San Francisco's medical center. This is like no other hospital I have been in. The prestige of this place is obvious.

From BambiniPt2

Unfortunately the Doctor only shows up for clinic one day a week and he had just been on a three week vacation so ended up waiting an hour and a half. Since we were not covered by any insurance we negotiated a $100 fee. By the time we were done everyone had gone home so it was not collected. I was waiting to see if they had the nerve to ask for it, but so far they have just apologized.

The staff was very nice and the examination the doctor performed was at a whole new level. He made observations and felt things that no one else had done. It was clear he was very specialized. He is not only the head of the department and chief surgeon, but he is also the professor and runs a research lab.

He explained the procedure he would probably do would be a single operation. The Kaiser Doc wanted to do a two stage operation with six months in between each surgery. We asked him about his complication rate and seemed to think it would be about 5% with Nico. The most common complication is a simple 25 min fix that is usually the result of a stiches coming apart.

The most illuminating comment came on the way out when we asked if we could be with him before he went under and when he came round. His answer was of course. "We want the parents in the recovery room". This was music to my ears because we had a very tense phone call with the Kaiser Doctor on this subject and he was doing everything possible to avoid answering that question.

As you may recall, this was an issue when Barbara had her procedure done. They kept me out of the recovery room until she had fully recovered (probably to eliminate an eye witness should there be complications) despite my request to be there when she recovered. Obviously Kaiser is trying to limit their liability in case something goes wrong.

Next he mentioned that the anesthesiologist uses a mask to deliver the gas. Now this may seem obvious, but good old Kaiser insisted the only way to do this was by inserting a tube down his throat. Barbara had this done in her procedure and her throat was torn up so badly she needed to suck cough drops for days. It took almost a full week to heal. In fact it was the biggest issue of her recovery.

I could not understand how so much damage could be done with today's technology, but they assured us there was no alternative. It was like she had a bad cold. She was in pain and her throat was raspy and very uncomfortable. This is not something a baby would be able to do anything about. He cant suck a cough drop!

It is likely that this would cause him so much irritation that he would not be able to sleep. Since healing is the most important part of this procedure, and sleep is key to healing, the tube down the throat is something I wanted to avoid at all costs. When the Doc said they use a mask we were overjoyed.

In preparing to take on the Kaiser machine, I contacted a few people from anti Kaiser sites like The Kaiser Papers with an appropriately named section "PATIENT HORROR STORIES - BY CATEGORY" and Just Health. They are a little militant but it never hurts to hear what they have to say. In one letter from Vicky, who has some experience in dealing with Kaiser, she points out that suing Kaiser engages mediation with DMHC that all members agree to when they sign up. She continues:

Kaiser is a private company and while DMHC ( Department of Managed Health Care)
is supposed to be helping patients they do appear to be controlled by Kaiser. Kaiser has a terrible track record for a lot of things but it does not matter to them nor does it matter to
any government agency that only cares about data. Kaiser provides data and
government agencies are hard pressed to obtain data from many other sources.
The government incentive is to not find wrong doing.

Here is what Kaiser Administration assumes you will do and they are probably
correct:

1. You will waste time with appeals that they will consistently deny because
they have a doctor on staff that they claim can do the job.

2. You will become frustrated and desperate. Kaiser administration counts on
that happening.

3. You will contact government agencies and be strung along and eventually will
be told that their hands are tied.

4. You will continue to be frustrated and your desperation to help your son
will increase so greatly that you will consent to the Kaiser surgeon and you
will be grateful no matter how he performs the surgery.

Since Kaiser just got fined $3m for poorly handling member complaints, we are going to give it a shot. I think we have a reasonable case mostly because their surgeons do one or two of these surgeries per year and the specialists do at least 150 per year.

We have also been courting the specialist in Dallas. While the Doc in San Francisco is good too, he is difficult to reach and should there be a problem, I suspect he will become unavailable. The Doc in Dallas emailed me his cell phone number and we had a great conversation. If he was in this area he would be the obvious choice. His published complication rate is 4% over the last ten years, and I get the feeling he would go to bat for us if a problem arose.

Barbara and I have discussed this at length and because so much is riding on this first surgery, I am going to fly to Dallas to meet him next week. I will ask him a few more technical questions about his procedure to make sure I fully understand what differences there are between him and the UCSF Doc, find out about his anesthesiologist and also check out the hospital.

If there are no red flags, then we will have a difficult choice. The flight to Dallas is not without its stress for the babies, but it may be worth it if the surgeon is better. Either way we have to decide in the next week and schedule it because there are a lot of things happening in October.

Convergence

From BambiniPt2

Videos:
Valerio tastes a lemon
Visiting friends Sunday park lunch band
Nico demonstrating his dexterity with the vertical blinds
Working in the office with two little helpers
Taking a little video break


Life has a funny way of throwing everything at you at once, or nothing at all. We are in the process of finalizing a surgeon for Nico's surgery, fighting with Kaiser, evaluationg alternative medical plans, researching the likely result of Obama's health care reform, looking for a new place to live and preparing for Barbara's trip to Europe in a few weeks while raising two newborns during the biggest recession since the great depression.

Despite the govt's feeble attempts to manipulate the numbers, everyone is feeling the pinch these days. In the discussion forums I contribute to, there is story after story of professionals in foreclosure, expensive toys getting repossessed and many people out of work.

The stress level is pretty high and its hard to remain calm with this much pressure. Luckily the bambini are oblivious and greet us every day with a smile. They are almost ready to crawl. Their motor skills are improving very quickly as you can see in the videos.

We go to the park most days just to interact with other families. The bambini love to watch the other kids pplay and their little legs start thrashing around as the kids run and play.

We take the opportunity to talk with other parents who's first comment is always "don't worry it gets easier" or "the first year is the toughest". Parents that have one child at a time have no idea. I feel like telling them that its like describing WW2 as slight difficulty between a few nations.

Barbara is exhausted, but still manages to play with the babies like she has not seen them all day.

I had a meeting with the landlord and negotiated a couple more months. After a long conversation with the HOA here, they agreed to do the fumigation at the beginning of November. It seems August is the worst time to look for a place to rent because parents want to move before school starts in September. Anything that come up on Craigs List is gone within 48 hours. This should change in the next few weeks.

Despite the free fall of the housing market nationwide, the bay area has proved quite resilient. This is changing. The number of properties on the market now is climbing and more importantly the length of time they are on the market is increasing. People everywhere are feeling the effect of this recession.

Nico appears to be adjusting to his helmet. It is quite hard and we have to be careful he does not hit Luca's head with it. They both love to play on the bed. As soon as we take them in there they get excited. They associate it with fun.

Unfortunately, Luca has now firmly associated the car seat with torture. As soon as you strap him in it, he starts crying and that rapidly turns to screaming. If you try and drive he just screams and will not be consoled. The last two car journeys were horrendous. I ended up stopping and taking him out of the seat. He continues to sob and he has little body convulsions for about ten minutes after.

As a result we cannot go anywhere in the car with him. We are not sure how to remedy this, but we will probably have to add this to the list of research topics. For now we just schedule around the nanny and leave him at home with her. Looking at places to live in the next couple of months will probably mean going separately. For now we just carry him or push him everywhere.

Medical Hurdle

From BambiniPt2

They had their first adventure into the water last week when their cousin brought a blow up raft for them.

We are in the phase where Luca has one mode of expression, a high pitched scream that reverberates around the room for a while after he finishes. He lurches forward like a thresher shark and ingests his whole foot for a moment before repeating the scream.

He has a 2000 yard stare and cannot be reached by calling his name or dropping him onto the bed where he bounces for a moment. If you drag him by his feet across the mattress, you get his attention. If you blow on his tummy before sending him back across the mattress under the cover for a moment, he may giggle. If you repeat this for a few minutes you may get a break before he resumes the regular schedule of screaming.

While this is going on, Nico's favorite thing is to grab the covers and pull them over his face and flail around kicking frantically doing a really good job of impersonating a suffocating baby. If you pull the covers back he has this huge grin and starts laughing before ripping the covers out of your hands and starting all over again. It's a little bizarre.

The day I discovered their enjoyment of this, Barbara had gone to the store. When she returned they were both safely in the middle of the mattress so I went to open the door. As I went into the kitchen she heard the commotion and ran to the bedroom and had an instant heart attack. It took days to convince her that she had not just unveiled a secret evil plan to suffocate the babies.


To add to all this fun, over the last two weeks I was struck with a mysterious "cold" virus. It began one day when my whole body shivered in one convulsion that went all the way down my back. After that, I was shivery and sweaty for two weeks but never had a sore throat of cough. An unusual summer flu perhaps.

The most annoying symptom was a constant throbbing headache and profuse sweating when I fell asleep. I decided to sleep on towels to soak it up but then I just woke up on a wet cold towel. With Luca's screaming, it was hard to tell what the exact source of the headache was, but I took more Tylenol in the last week than I have in the last five years.


Nico finally got fitted for his helmet. He adapted to it remarkably well considering how big and bulky it is. He begins by wearing it for one hour the first day, two hours on and two hours off the second and so on. Barbara is in charge of determining what he is comfortable with and so far has elected not to make him wear it all night. We have heard that this makes sleeping very difficult, but well find out for ourselves soon enough...

Meanwhile, the building we live in has termites it seems. The landlord has informed us that they will be tenting the whole thing and piping poison gas everywhere to kill the tiny little wood eating bugs. This would normally be just a headache, but this is all scheduled for October, the month that Nico must undergo surgery.

It seems Nico has a fairly common urinary tract issue from birth and for various reasons it needs surgery. This has opened Pandora's box, because it is a very delicate surgery obviously, and the Kaiser Urologist does very few. To complicate matters, there are a dozen techniques that are in practice today.

Kaiser has a pediatric urologist, a very nice man, and I am sure he is a good surgeon, but it turns out he only does one of these kinds of surgery a year. We discovered that the specialists in this field do 150 a year. As someone put it, "you don't want your son to be his refresher"

So I began to search for a specialist surgeon in the Pediatric Journal of Urology. This publication (only slightly less enthralling than a copy of house and garden) has all kinds of articles that delve into the technical details of the various methods and their complications.

Our Kaiser Doc recommended a two stage approach, meaning two surgeries. The way he explained it made sense. The first stage would have time to heal and then the second stage could be performed.

This week I contacted one of the experts in the field I found, who agreed to a five minute phone call. His first comment was why would you want to do two stages? This should be done in one stage!

I took the opportunity to ask him what the complication rate was, and he threw out a the number ten percent. So I thanked him and began the process of setting up an appointment with him (which we must pay for because Kaiser does not refer to out of house doctors) and went back to trying to discover what the numbers show for complications (requiring subsequent surgeries to fix the problems).

I wondered if there is a body that regulated surgeons and keeps track of their results. There isn't. A general search turns up complication rates anywhere from 10-25%, but this depends on the technique used and the skill of the surgeon.

Next I contacted my good doctor friend and asked him if he keeps track of his surgeries. "of course" he says. He is a very conscientious Doc so I asked if he thought all surgeons do this. He said he was sure they all knew their success rate, but they do not have to report it so sometimes they may not tell you. There is also the problem of apples and oranges. One patient may have a mild problem, the next may have very complex issues so do you count them both?

I went back to Google and after some hours, I found what I was looking for. A Doctor in Dallas published an article this year with his results using his technique. The results went back ten years. His complication rate was 4%! Wow. It turns out he invented this procedure and it is now in widespread use all over the world.

I wanted to contact him directly, without going through the formal process of a referral and appointment, So I set about getting an email address for him.

Prominent specialists generally do not publish their email address, at least not one that they personally check, so you have to get a little crafty. Having contacted a few of these kinds of people, I have learned that the geeks that set up hospital and university email accounts are rarely very creative.

They usually use the persons last name preceded by his initials or complete first name. Sometimes they separate the names with a period. Next you need the most likely domain name (like UCLA.org) and you can have a good shot at getting straight to his inbox.

The next part is a little more tricky, because you are basically engaging a highly paid specialist in a free consultation. This is not how it usually works. First you are supposed to see your Pediatrician who gives you a referral. Next you make an appointment and finally you get to drive all over the map to talk to him in his office. All very inconvenient, expensive and time consuming.

For the surgeon in San Francisco, I used the flattery technique in the email body followed by a couple of simple easy questions and the mention of attached pictures (which I then do not attach). This usually prompts a polite response along the lines of "yes I can do this kind of surgery, but the pictures didn't come through."

That response does three things: it confirms his email address, it confirms he reads the email at that address and it establishes the foundation for a dialog. It is a very very important step. I have learned the hard way that sending emails with everything they need may not get you a response so you have no idea if they read it and just didn't respond, or didn't read it at all.

The response also tells you a lot about the person you are dealing with. In this case, we are going to need some post op follow up and we don't want to find the Doc inaccessible.

The response I got from the UCSF doc was a single character... he could only muster one character. A question mark. That's it. Even so, I accomplished my three goals and the dialog began. I sent the pictures and a long explanation of the Kaiser situation and some other information and got a second response. This time there were three lines, no Dear Sir, or Hello Mike or any preamble whatsoever, just the three options we had for proceeding with him.

Either this guy is super super busy and has been very nice to find a spare second to answer an email, or he doesn't bother with bedside manner because he is a world expert in his field. Either way, it's irrelevant if he can work with us.


The only concern with a character like this is that he just does what he wants regardless of what might be in the best interest of Nico. There are several factors that need careful consideration in this case, and sometimes surgeons think that the solution to everything is surgery. That is not always true as stories of hypospadias cripples on the hypospadias forums attest.

Earlier in my research I had contacted roughly five professors of pediatric urology with questions about the long term effects of doing this surgery and what was reasonable to ask for like referrals to previous patients and access to the surgeons patient data with personal information redacted.

Some of them had warned me to be careful about checking this information which is what eventually led us to discover the Kaiser Doc was probably not going to work. Apart from that, Kaiser stonewalls any attempts at gathering real patient data.

After the call with the UCSF Doc, it was clear he was very certain about what he would do. I found a few articles in the Journal of Pediatric Urology by him, but they were what I would call waffle pieces. There was no hard data in there, just long discussions about what might cause these defects. In stark contrast, the Doc in Dallas had nothing but hard numbers.

So next I contacted the Dallas based specialist using the same email technique. It turned out, one of the six email addresses I guessed was a direct hit and he responded the next day. It was a detailed professional courteous response with a polite mention that the pictures were missing.

After a few exchanges, it was very clear this guy was going to be a lot easier to work with. He said that he would not really know if the surgery would require two stages until he had Nico on the operating table. He said Nico could fly back to California after three days and there "should be no complications". He is probably the only one that can make that statement with any degree of credibility.

We decided to see the UCSF Doc (and probably two others)anyway in case there is some fragment I missed, but at the moment it looks like we will fly to Dallas in October.



As if that is not enough we have another big problem, Medical insurance. We never expected to have an issue that could only really be operated on by one of a handful of people in the world. Now that we need to go outside Kaiser, we are stumped.

The problem is that if we switch to a PPO like Blue Shield or Blue Cross, Nico will be excluded because he has a "Pre-Existing" condition. In the US, health insurance is little more than a scam.

They good news is that Obama's health reform specifically addresses the exclusion of children and requires that insurance carriers not deny them starting September 23rd this year. Sounds good? Not so fast.

This New York times article points out the insurance industry has threatened to stop issuing any policies for children.

In the next leg of research, I contacted insurance agents and tried to get a feeling for what is coming. Will they in fact offer coverage? Will it be super expensive? How long will it take to get the policy in effect? Will it have exclusions and large deductibles? No one knows.

So now we are exploring the possibility of flying to Italy or the UK to have this surgery done. We are not sure what the requirements are in or the UK for the national health coverage, but there is a surgeon at Great Ormond Street Hospital for Children who is well known for this procedure. We have not found anyone in Italy yet that might be at this level.

If these ideas don't work out, we are just going to have to pay for it ourselves. We have not got an estimate for the cost yet, but its not going to be cheap.

Since this procedure is best done when Nico is about eight months old because he still isn't mobile and babies heal really well we are told, we have about six weeks to get this all lined up.

If Barbara didn't have a trade show in France and we did not have to move the same month, this might be a little less stressful! Anyway those are stories for another post perhaps.