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| 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.
