Surgery Schedule

I have heard that many people had difficulty understanding the issues brought up by the second opinion yesterday. We have had difficulty making sense of it so it was reassuring to speak with Dr Lewin today and hear him say that he:

"wouldn't expect a family to be able to make this decision. It is a very difficult call even for experienced cardiologists... there are so many factors that come into it and surgeons favor different approaches. There is not one right approach in general, but you have to work out which is the best approach for each child."

Ideally, Josh and I would like him to come to agreement with Dr Hanley - either that the Ross-Kono is the preferred valve replacement option or bio-prosthetic [Debate: + side: if it works we get 15-20 years before valve replacement - tendency toward premature failure in patients with BAV] OR we cannot go that path.

Neither Josh nor I is comfortable with the fact that the Ross procedure uses the pulmonary valve as the aortic valve replacement which extends the area of pathology in Wren's heart. That is fine in cases of discrete aortic stenosis, but he has enough vague and complicated issues as it is and the risk of mitral valve issues too so we want to limit this as much as possible.

I called Stanford and scheduled a "Phone Consultation" with Dr Hanley. The first available was 9am on 9/18. On the advice of their scheduler we have also put Wren on the surgery schedule there. Dr Hanley is already pretty fully booked until the end of the year so she needs to confer with him about when to fit Wren in. The date should be confirmed today:

October 9th - after a major case
OR
November 13th - after Dr H's break

I spoke with Dr Lewin about this and he said we could also be on the Seattle schedule. Our date there is:
Pre-op: October 17th
Surgery: Monday October 20th

So, that gives us a rough timeline either way.

Shannon

Stanford Opinion & discussion "To replace or not replace AV"

Here is the summary of my conversation with Dr Lewin. He is sending me a copy of the letter.

----------------------------------
The team Looked at the cath and echo findings. They agreed that Wren did need 'intervention'. Surgery should be done relatively soon given the parameters.

In particular, he needs relief of subaortic narrowing and supra-valve narrowing.

Approach:
They were cognicent of the small size of the valve but felt could potentially be spared and were hopeful and inclined to take the more conservative approach of leaving in the valve.

In leaving the valve behind they know its not going to be functional long term...

[Dr Lewin's comment: Of course it is preferable to leave in the AV in a young child because the alternative is not optimal but I am very worried about the valve....]

After the surgery for the repair of the SAS and supra-valve stenosis we will test the AV valve gradient and the fallback option, should we have an unacceptable gradient will be the Ross-Kono procedure.

[Dr Lewin spoke with Dr Cohen (Seattle Surgeon) about this approach and they are concerned about the issue of multiple bypass runs and potential cardiac dysfunction as a result of this strategy. If the AV gradient is too high they would have to put Wren BACK on bypass and expose him to further risk of heart, brain damage. Overall, a much longer run on bypass increases the risk considerably. Obviously, they are tolerant of a higher degree of risk in surgery while we feel more conservative there.

[Dr Lewin continues...."In a small child I am always in favor of saving the valve...BUT in this case we have already had intervention done on the valve -so I have added concern about leaving a valve that already have intervention on.

Also, Dr Cohen said that he can potentially get in an adult size valve which would delay the need for replacement...]

HANLEY: Go ahead with Ross-kono

[Dr Lewin: "Up here we are really concerned about the Ross-Kono for patients with a bicuspid aortic valve (BAV). It used to be thought that BAV was an isolated phenomenon but current dogma is that it is more of a global tissue abnormality and we have seen a fair bit of literature to show that patients with BAV have early deterioration of the (pulmonary valve) PV in the aortic valve (AV) position because it was never meant to do that sort of work in the high pressure AV position and it has similar deficiency as the BAV in terms of tissue composition.

so people are feeling more and more uncomfortable about doing the RK procedure on these patients. If you call around you will find people willing to do it, but its not widespread anymore.

It may be that that was a more generic statement about replacing the valve.. but...

Now, the Pacific NW seems be to endemic for AV disease so we have a lot of experience seeing what happens long term when you intervene in the AV and we are pretty nervous about that whole procedure and what Dr Cohen was recommending was a bio-prosthetic valve - a metal scaffolding with a valve in the middle which is better than pure animal valve - it degenerates slower than pure animal valve.

His answers to some of my Qs:

Q: How do they decide whether the valve should be saved?
A: In making the decision on whether to keep the valve they look at:
Real valve size.
Looking at leaflets, how thick, how pliable, how much motion.]

Q: Would he be on Coumadin with the bio-prosthetic?
a: No, It tets to the point of what is the best choice - mechanical valve you get adult valve size but you require anti-coagulation but not with a bio-prosthetic.

Q: What is the timing? You said "soon" - what does that mean
A: Its not a set time. If we did nothing he may be OK in a year or he may have a rhythm disturbance which would be [long pause] catastrophic.
Q: You mean he could have a heart attack and die?
A: Well, yes... or serious damage to the heart...

Q: Dr Hanley is very highly regarded. Why would he recommend the Ross-Kono if it is falling into disrepute? Could we call and ask whether he would do another kind of valve replacement?
A: Well, he wrote ROSS-KONO on the report and he didn't just write this off the top of his head so that is what he thinks we should do. We could call and ask but... well, this is what he thinks here. I presume he thinks that the articles, the data, is flawed and that we can 'get away' with the Ross Kono in the presence of BAV disease. I don't know....

My thoughts:
I am out of my depth in making this decision. Clearly, Dr L leans toward Dr Cohen's views. He is concerned about the Ross-Kono. I don't like the idea of a Ross-Kono either but I trust Dr Hanley's reputation. I like the idea of staying here but if there is a judgment call to be made I err on the established judgment of expertise - Stanford BUT I confess I have been swayed by this information about Ross-Kono and BAV PLUS neither of us want the R-K and another valve-replacement. I like the idea of a longer term more conservative appraoch.

BUT both surgeons present their approach as more conservative. Dr H's team are more conservative because they want to save the valve. Dr Cohen will also save the valve if he looks at it and thinks it may last a while [he said that too] BUT he is more suspicious of it right now. He feels that avoiding a long period on bypass AND another re-operation soon is more conservative.

Who is right? I Dunno.

I have set up an appointment with Dr Lewin for MONDAY 5th at 9am. Josh and I will talk through the issues.

AND

A Second Opinion on this mess with Dr Krabill at Swedish. Her earliest opening is September 18th but I can phone for cancellations "as often as you need to" said the receptionist.

Wait, I need to call again immediately.

Perhaps I am too wary but I feel that while our doctor here is fabulous he cannot be the source of the dispassionate advice I need right now.

We will hear today

At 10.31am I missed a call from Dr L. I was running at Alki when the phone rang but it went to voicemail before I could fumble it out of the belt-clip I was using. Argh.

Here is the message:

"Hi its ML. Its Thursday Morning at 10.30 and I finally got the letter from Dr Hanley and have reviewed it and thought about it a bit and can have conversation with you whenever you are around. I am in a meeting from 11-12 but I shall try and give you call after that and if I don't reach you, perhaps later in the day.

You can reach me through Dina, on 9897XXXX, but again, I will be out form 11-12 but you can try me or I will call later."

So now we have some time to obsess. Obviously, Dr Hanley has suggested something different to Seattle Children's or he wouldn't have to "think about it." Right? But what? More? Less? Sooner? Later?

Anyway, check in later.

I have set my cellphone volume to HIGH and have removed it from the offending clip ;)

No news, again

Its now 10 days post the last conversation with Cardiology about our referral to Stanford (Dr Hanley). I called Dr Lewin who called Stanford but did not hear back by the end of the day. He is out of the office tomorrow but may hear back and will call from Tri-cities if he does. Otherwise Thursday.

I asked whether this kind of time frame is usual. He said it has been 2 years since he had a patient referred down there and they had a different system then where he received a call from Dr Hanley.

He didn't think it was beyond a "normal" time-frame for referral.

Sure feels too long.

Wren likes painting (and Frost does too)

This morning I brought out the paints and let Wren have a go. Last time I tried he was not keen on the mess. However, today he was very happy and I have some lovely pictures of him painting and (shock, horror) FINGER painting. Again, he used to be very opposed to the idea of finger painting because it got his hands dirty.





As Frost played with painting, I was a bit alarmed to discover that he did not know what colors were created by mixing. He had no idea that blue and yellow make green [was he only doing scrounge art?] or that red and yellow make orange, so we spent some time experimenting. This started because he told me that "blue and black never make other colors when mixed with anything". That was quickly disproved. He also seemed to expect any pair of colors to make brown and was pleasantly surprised at the range of colors beside brown which resulted from our three primaries and green.

More color theory shall be forthcoming!

Back to School Picnic

While I am catching up on last week, here are some pictures from Tuesday night's Back to School picnic. It was held near Greenlake at a group picnic shelter and we were lucky that the rain held off until the closing drumming & guitar circle.

Wren was very excited by the music and stood inside the circle where he was able to watch the guitarist. It seems obvious to me that children are going to learn what we, as parents, DO rather than speak about or urge but it is still impressive to see Wren so certain that a Guitar is relevant to him because he has seen and enjoyed Joshua playing one. He says "TAR, TAR" and points it out to me. He also enjoys the "hey diddle diddle" nursery rhyme because the cat has a 'tar' too. I guess this means I have to start speaking Mandarin and playing an instrument if I am to encourage this behavior [add this to my self-development shopping list.]



Joshua and Wren. Josh spent much of his time chasing and entertaining Wren so I had a chance to meet the new and returning families and friends.



Frost helped clean up the toys at the end and spent a while arranging the hoops and cones into a "peace sign" of which he was very proud.


This morning, Frost rode his bicycle to and from the playground and around the block while Wren and I followed in the stroller. He also climbed the entire length and height of the new playground climbing wall.

He said "isn't it amazing that this day I am doing so many risky and dangerous things! Like I climbed up that climbing wall when I could have fallen and broken my leg or something and I rode my bicycle down a steep hill. But in the end it was really FUN."

2 Year Molars

Wren has been waking up at odd hours lately, but slept better after Tylenol. Tonight at tooth cleaning I found the culprit - new molars. He has two lower molars at the back...almost completely out. There is only the third cusp to come on one side and a bit more on the other.

We had a great day today - cleaning the house and doing a big shop at Costco - a huge warehouse of large slabs and bags of everything. We now have 10 lbs of sugar, vats of diced tomato and enough toilet paper to stock a summer camp.

Shawn and Sarah came over tonight and shared the exciting news that they are putting their house on the market in a few weeks. We would be very happy to have them [and the pug, Francis] living closer to us. Sarah also commented that Wren is now a toddler. Its true.

More later.