I spoke with our case manager at the Insurance company. She said that they pay $1060 for Synagis per dose. This does not include the cost of nursing help or staff to administer the shot. We have to pay our out of pocket deductible for the year for pharmaceutical and in-surgery charges because it is so early in the year but I think we usually pay that over the year anyway.
More to think about.
Tuesday, January 6, 2009
Synagis or No Synagis?
I drove through the remains of last night's snow to take both boys to the pediatrician today. Frost had a plantar wart frozen off and Wren had his 2 year check-up. Wren is doing well in all the Normal Baby things. He is developing normally in all areas and was ahead of the curve in his ability to jump up and down on the spot. He also understood all the pediatrician's instructions to "lie on your back", "roll over" and "take big deep breaths now" which pleased her a great deal.
Stats:
Stats:
- 36.5 inches long = 90th percentile
- 27 lbs 9 oz = 45th %tile
- 19 7/8 " head circumference = 85th %ile
- hematocrit normal (11.8 up from 11.3 pre-surgery)
Here is Frost having his wart frozen while he squeezes Wren's raccoon.
Shots
On the way to the pediatricians Frost was begging to have a shot himself. He said that if he could have a shot he could show Wren it was OK and how to do it. I was a bit taken aback by this but when we came into the doctor's room he asked again. She checked the chart and found he did need a shot - his Hep A booster and Hep B (one of those I refused early on).
Frost had his shots first and managed not to cry, just to say "ow" rather plaintively while sucking vigorously on a candy-cane I gave him as an incentive during the nitrogen-freezing of the wart.
Wren received Hep A & B and varicella (another I had refused for Frost until Wren's CHD). Wren was very sad afterwards and said "go home, all done, get dressed" in one breath. Thankfully it was all done.
The Synagis Question
On our cardiologist's recommendation (Dr Olson) we had asked our pediatrician to order Synagis this year. Apparently the recent surgery and the ongoing haemodynamic disturbance meant that Dr Olson feels "he could get pretty sick" if he contracted RSV. Synagis is made from immunoglobin and each shot (for a 2 year old) costs around $4,000. He would need 4 doses this year.
This is the status of the application:
1) December - applied for insurance coverage for Synagis.
2) Cover REFUSED (December 10th)
3) Appeal placed by pediatrician (on my request). Cardiologist submitted requested evidence.
4) Insurance said approval on appeal UNLIKELY. Ped notified cardiology about refusal and asked "how far to push the appeal."
5) Card responded that since he is now 2, we need not push all the way.
6) Discussed with us and we decided no Synagis - Wren would be OK without it. Ped suggested we avoid big crowds of children and regular LARGE playgroups to reduce risk of RSV and respiratory problems.
6) Today, insurance faxed APPROVAL for 4 months of Synagis. Ped very surprised.
7) Ped notified Card about what to do. He said emailed "good. He should get it "he could get pretty sick if he gets RSV."
8) Ped notifies us and asks what we want to do.
So, my question is "Shall we order Synagis for Wren?" Its been approved but he may not need it. He IS 2. It is painful. It is very expensive [for insurance]. I shall have a talk with Joshua and make a decision. I think our insurance will cover home-help doing it (which means they send a nurse to give him the shot at home rather than visiting a clinic) which is much less stressful for all of us.
Socialization
Apparently the one area our pediatrician would like us to do something is in Wren's social life. She noticed that he is very social and wants to make sure he has some interaction with peers (other toddlers). He tends to run around with nerf guns and knows Indiana Jones, Transformers and Batman so she is probably right in asking if he has babies to stack blocks with. She suggested we set up a small playgroup at home rather than join a preschool playgroup to avoid the germiness of big playrooms. I shall see what I can figure out. Any toddlers want to play with Wren? He plays well and we can put away the shark guns.
Dentist
We have also been asked to set up a first dentist visit for the next 6 months. I have an amoxicillan prescription for a prophylactic in case of a tooth cleaning. Its to avoid endocarditis. Apparently early cleanings are a good idea to reduce build up of the kind of bacteria which can cause heart infection later on.
PS.
Here is the snow last night!
Monday, January 5, 2009
More Christmas and More Snow
This will be no surprise to you in Seattle but its snowing AGAIN. We have another few inches on the ground and its still drifting down. The weather reports are for a thaw overnight but I am not sure of that myself. I know many of you are hoping for school tomorrow, so we shall have to see.
Odyssey 1 & Visiting Tacoma
Meanwhile, we have had a fun few days. On Friday we went down to Tacoma to visit Shawn and Sarah and spent some time at Odyssey 1, an arcade and climbing gym for kids that is fairly near their house. Wren and Frost loved Odyssey. Frost ran around until he was red in the face and Wren climbed high into the Under 4 climbing platform where we could not follow. He was laughing and peeping through the mesh walls and out the plexi-glass windows of the tunnel compartments. He "did it self" all the time. He also enjoyed hitting the ducks in the little arcade and pulling the tickets from machines after a game. Skee ball is another great favorite of his although his throws never reach a target.
Another little Christmas
Today felt like Christmas. Wren received gifts from Heather & Kyler and Laurie's family. He was very excited by some dinosaur transformers that Kyler passed on to him. One of them is causing us some hilarity. When transformed from a dinosaur it becomes "dinosaur pen*s guy". I know that can't be right but no matter how I manipulate it I cannot make that big ding-dong disappear! Here is dinosaur-pen*s-guy and Wren facing off over breakfast.
It is also a particular good season to go to thrift stores. All those toys displaced by Christmas gifts have found there way out to the charity pile and I picked up some lovely toys for Wren at Value Village. His favorite is a large Bob the Builder Scoop truck which says "are you ready" loudly.
Wren's is also enjoying a duplo airport and airplane which I bought on Craigslist. The game evolved from a game with a big cardboard box in which he sits in the box and pretends to be a pilot flying an airplane to "the mushrooms" (a poster on the wall) or "to see ganny" [in Australia]. Aeroplanes are all about Granny in this house! Now he plays guys going on the airplane, loading suitcases and getting off. Sometimes they "see ganny" other days they fly around aimlessly to load and unload packages.
I shall try and post some pictures tomorrow.
Odyssey 1 & Visiting Tacoma
Meanwhile, we have had a fun few days. On Friday we went down to Tacoma to visit Shawn and Sarah and spent some time at Odyssey 1, an arcade and climbing gym for kids that is fairly near their house. Wren and Frost loved Odyssey. Frost ran around until he was red in the face and Wren climbed high into the Under 4 climbing platform where we could not follow. He was laughing and peeping through the mesh walls and out the plexi-glass windows of the tunnel compartments. He "did it self" all the time. He also enjoyed hitting the ducks in the little arcade and pulling the tickets from machines after a game. Skee ball is another great favorite of his although his throws never reach a target.
Another little Christmas
Today felt like Christmas. Wren received gifts from Heather & Kyler and Laurie's family. He was very excited by some dinosaur transformers that Kyler passed on to him. One of them is causing us some hilarity. When transformed from a dinosaur it becomes "dinosaur pen*s guy". I know that can't be right but no matter how I manipulate it I cannot make that big ding-dong disappear! Here is dinosaur-pen*s-guy and Wren facing off over breakfast.
It is also a particular good season to go to thrift stores. All those toys displaced by Christmas gifts have found there way out to the charity pile and I picked up some lovely toys for Wren at Value Village. His favorite is a large Bob the Builder Scoop truck which says "are you ready" loudly.
Wren's is also enjoying a duplo airport and airplane which I bought on Craigslist. The game evolved from a game with a big cardboard box in which he sits in the box and pretends to be a pilot flying an airplane to "the mushrooms" (a poster on the wall) or "to see ganny" [in Australia]. Aeroplanes are all about Granny in this house! Now he plays guys going on the airplane, loading suitcases and getting off. Sometimes they "see ganny" other days they fly around aimlessly to load and unload packages.
I shall try and post some pictures tomorrow.
Sunday, January 4, 2009
Why is it so cold this summer?
As we were driving to Matthew's for a playdate Frost asked me "Shannon, why is it so cold this summer?"
I concentrated on the four-way stop for a little while trying to parse the question. Outside drifts of snow remain from the last storm and only the evergreens are in leaf.
Shannon: What tells you its summer right now?
Frost: Well, it is 2009 now. Daddy and I even counted down 10, 9, 8, 7, 6, 5, 4, 3, 2, 1..... 2009!!!
Shannon: Uh huh? And what are the seasons of the year?
Frost: There is summer, winter, spring and fall.
Shannon: Its summer, fall, winter and ..
Frost: Well, I was just TELLING you what they ARE not putting them in ORDER.
Shannon: Ok. Do you know what makes seasons change?
Frost: The earth moves around the sun.
Shannon: And sometimes we are closer to the sun and the angle of the earth makes us get a bit more sun in the day and it gets warmer which is summer.
Frost: I KNOW.
Shannon: Well, it takes a long time for seasons to change. It happens slowly. So its just started being winter and it will go on for a long time.
Frost: So its winter?
Shannon: Yes.
Frost [pause]
Shannon: It will be spring in March but it will only be summer and really hot much later. It will be about 20 more weeks till anything like summer.
Frost: So its winter?
Shannon: Yes.
Frost: Oh.
Frost's Obsession with Graphic Novels
Frost is 7 and he is obsessed with graphic novels. He reads books of other types but he will read the same graphic novel (aka cartoon) 7 or more times. Here are the books and graphic novels he has read recently and those he keeps reading like candy again:
Diary of a Wimpy Kid X7
Diary of a Wimpy Kid: Rodrick Rules X7
Warriors - Graphic Novel version X2
Otto Undercovery: Canyon Catastrophe
Otto Undercover: Born to Drive
Jeremy Thatcher, Dragon Catcher
Guiness World Records 2009 (Mum, he bought this with your Christmas Money - it has 3D glasses and many gross records)
The Big Bad Book of Bart Simpson X10
The Big Book of Bart Simpson X10
The Big Book of Simpsons Barn Burners X10
Lego Catalogues for the past 4 years (reads prices, model information and makes LISTS of those he wants)
Warriors - Into the Wild (reading the book version now)
All Captain Underpants books (many times)
Warhammer Dwarf Army Handbook
The Ethics of Blogging about our Kids
I have been doing a backup of files on my computer and uncovered the old "journal" I used to keep about Frost when he was 2. It is a wonderful record of the year he was one - anecdotes and descriptions as well as reflections on the types of toy he enjoys and the games he plays with friends.
Reading it has made me wonder about the similarities and differences between blogging and writing a journal. I think that the main difference is the audience. When I wrote a journal about Frost I imagined him reading it when he was older and smiling when he remembered or learned about his younger self. The audience of this blog includes family and friends who would find this interesting, but also many who are concerned with the life of Wren and his heart issues. One audience (the journal) is relatively private and the other is more in the public domain. I am wondering whether I could write a reflective entry in a monthly journal for Frost which I keep on the laptop and draw on the anecdotes and I events I share here to make a bit of story about his life which is out of the public eye as a way to respect both voices.
People have often asked me how I feel about blogging about Wren and his heart - whether I have privacy concerns. The answer is "no, not yet." When you read journal articles on Shones Syndrome written 10-15 years ago you find a very high mortality for kids like Wren. In many ways, he and others of his generation of kids with complex CHDs, are the first to survive with relatively normal lives. To me, it seems that the information and courage I gain from reading about other 'heart' kids more than compensates for having his medical experiences shared and it helps me focus on the many fun and happy times we have despite the stress of the perenial concerns.
May I change my mind as he develops more concern for his own privacy? Yes. I reserve the right to be fickle and start writing about my vegetable garden and attemps at raising poultry instead.
I concentrated on the four-way stop for a little while trying to parse the question. Outside drifts of snow remain from the last storm and only the evergreens are in leaf.
Shannon: What tells you its summer right now?
Frost: Well, it is 2009 now. Daddy and I even counted down 10, 9, 8, 7, 6, 5, 4, 3, 2, 1..... 2009!!!
Shannon: Uh huh? And what are the seasons of the year?
Frost: There is summer, winter, spring and fall.
Shannon: Its summer, fall, winter and ..
Frost: Well, I was just TELLING you what they ARE not putting them in ORDER.
Shannon: Ok. Do you know what makes seasons change?
Frost: The earth moves around the sun.
Shannon: And sometimes we are closer to the sun and the angle of the earth makes us get a bit more sun in the day and it gets warmer which is summer.
Frost: I KNOW.
Shannon: Well, it takes a long time for seasons to change. It happens slowly. So its just started being winter and it will go on for a long time.
Frost: So its winter?
Shannon: Yes.
Frost [pause]
Shannon: It will be spring in March but it will only be summer and really hot much later. It will be about 20 more weeks till anything like summer.
Frost: So its winter?
Shannon: Yes.
Frost: Oh.
Frost's Obsession with Graphic Novels
Frost is 7 and he is obsessed with graphic novels. He reads books of other types but he will read the same graphic novel (aka cartoon) 7 or more times. Here are the books and graphic novels he has read recently and those he keeps reading like candy again:
Diary of a Wimpy Kid X7
Diary of a Wimpy Kid: Rodrick Rules X7
Warriors - Graphic Novel version X2
Otto Undercovery: Canyon Catastrophe
Otto Undercover: Born to Drive
Jeremy Thatcher, Dragon Catcher
Guiness World Records 2009 (Mum, he bought this with your Christmas Money - it has 3D glasses and many gross records)
The Big Bad Book of Bart Simpson X10
The Big Book of Bart Simpson X10
The Big Book of Simpsons Barn Burners X10
Lego Catalogues for the past 4 years (reads prices, model information and makes LISTS of those he wants)
Warriors - Into the Wild (reading the book version now)
All Captain Underpants books (many times)
Warhammer Dwarf Army Handbook
The Ethics of Blogging about our Kids
I have been doing a backup of files on my computer and uncovered the old "journal" I used to keep about Frost when he was 2. It is a wonderful record of the year he was one - anecdotes and descriptions as well as reflections on the types of toy he enjoys and the games he plays with friends.
Reading it has made me wonder about the similarities and differences between blogging and writing a journal. I think that the main difference is the audience. When I wrote a journal about Frost I imagined him reading it when he was older and smiling when he remembered or learned about his younger self. The audience of this blog includes family and friends who would find this interesting, but also many who are concerned with the life of Wren and his heart issues. One audience (the journal) is relatively private and the other is more in the public domain. I am wondering whether I could write a reflective entry in a monthly journal for Frost which I keep on the laptop and draw on the anecdotes and I events I share here to make a bit of story about his life which is out of the public eye as a way to respect both voices.
People have often asked me how I feel about blogging about Wren and his heart - whether I have privacy concerns. The answer is "no, not yet." When you read journal articles on Shones Syndrome written 10-15 years ago you find a very high mortality for kids like Wren. In many ways, he and others of his generation of kids with complex CHDs, are the first to survive with relatively normal lives. To me, it seems that the information and courage I gain from reading about other 'heart' kids more than compensates for having his medical experiences shared and it helps me focus on the many fun and happy times we have despite the stress of the perenial concerns.
May I change my mind as he develops more concern for his own privacy? Yes. I reserve the right to be fickle and start writing about my vegetable garden and attemps at raising poultry instead.
Friday, January 2, 2009
Happy New Year
I am wandering around half asleep this afternoon - it feels like one of those days on which we set the clocks back. I guess this is from going to bed at 11.30pm!! I almost made it till midnight. Frost stayed up till 1.30am after going out to a party at Carrie and John's house (of Petra fame) but I was surprised he did not fall asleep when we returned earlier.
I could not resist posting this picture of Wren's birthday cake (birthday was a couple of weeks ago). Mum sent it to me and I have only now been dealing with my inbox. It was going to be an excavator but became a bulldozer due to Technical Difficulties.
Happy New Year everyone and may the poor get richer, the racoons less voracious, calories less fattorific, heart defects less serious and the weather less weathery. Oh, and how about some world peace and discount airfares to Australia while we are at it.
I could not resist posting this picture of Wren's birthday cake (birthday was a couple of weeks ago). Mum sent it to me and I have only now been dealing with my inbox. It was going to be an excavator but became a bulldozer due to Technical Difficulties.
Happy New Year everyone and may the poor get richer, the racoons less voracious, calories less fattorific, heart defects less serious and the weather less weathery. Oh, and how about some world peace and discount airfares to Australia while we are at it.
2008 Guidelines for the Management of Adults With CHD
For parents of children with CHD's only (you won't be interested otherwise). I found this November 7th publication on guidelines for management of adult patients with CHD's. I know some of the issues have been discussed at our group before. It is a PDF file you would have to download.
Cardiology/American Heart Association Task Force on Practice Guidelines:
Executive Summary: A Report of the American College of ACC/AHA
2008 Guidelines for the Management of Adults With Congenital Heart Disease.
It outlines management issues for CHDs including patients with Shones and many issues associated with LVOT obstruction, criteria for valve replacement and issues with bicuspid aortic valves.
Cardiology/American Heart Association Task Force on Practice Guidelines:
Executive Summary: A Report of the American College of ACC/AHA
2008 Guidelines for the Management of Adults With Congenital Heart Disease.
It outlines management issues for CHDs including patients with Shones and many issues associated with LVOT obstruction, criteria for valve replacement and issues with bicuspid aortic valves.
Thursday, January 1, 2009
LOOK LOOK
Wren's word of the day yesterday was "look look". Everything was "look look!!!!" We went on a walk around the block (seeing the windswept streets and fallen branches after snow and wind-storm) and these are his most memorable comments:
"Look look!!! I got two trees. I carry them. " [walking along holding a bunch of twigs]
"Look look, I find yucky email!!" [finding a scrap of wet paper stuck to the sidewalk]
"look look, I find rock! [holding up a single small pebble from the hundreds in a rock pathway.]
"Look look!!! I got two trees. I carry them. " [walking along holding a bunch of twigs]
"Look look, I find yucky email!!" [finding a scrap of wet paper stuck to the sidewalk]
"look look, I find rock! [holding up a single small pebble from the hundreds in a rock pathway.]
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