Wednesday, October 1, 2008

Where are we at with the surgery stuff?

If you're like most of my friends, you have lost track of what is going on about Wren's surgery. In the last few days I have had 3 loyal blog readers ask me to explain the current plan and also "how are you doing?" So, if you can't see the wood for the trees - here is an update to the question: When and where is Wren having his surgery for left-ventricular outflow tract obstruction and what surgery is going to be done?

We are planning to go to Stanford BUT
We have not yet cancelled our surgical date at Seattle Children's. We are waiting to hear from Dr Krabill. Dr Lewin (our primary cardiologist) has given advice which leans towards staying in Seattle. He does not think it wise to be aggressive about saving the native aortic valve. He favors a plan that assumes mechanical aortic valve replacement with a kono procedure and has made us fearful of the myectomy approach of Dr Hanley because he says that, in his view, the success of the procedure is no reoperation in <5 years. He feels this is a very real risk with a myectomy approach saving valve.

STILL we are planning to go to Stanford because:
1) We felt very comfortable with the experience, reputation, manner and plan proposed by Dr Hanley. He was willing to discuss Wren's case and differentiate between technical, lifestyle and 'unknownable' factors in the surgical plan. He was also willing to change his plan on non-technical points.
2) We were impressed that he has done 100's of kono procedures and relatively few are done in Seattle. If a valve replacement is required we feel he is a more experienced surgeon.
3) Since "surgery is largely pattern recognition" according to my friend Natasha - we want someone who has seen more variations of the pattern and can make those inexplicable judgments in times of crisis or at critical junctures IF things do not go according to plan.
4) Stanford is a high volume center. Seattle is a medium volume center. Higher volume is correlated with better outcomes in pediatric heart surgery.


No news from Dr Krabill BUT
We are still waiting to hear back from Dr Krabill. I am surprised and a bit disappointed that she has not called yet, even to say that she is waiting for more information. Right now, I have left two messages (Friday and Monday). When I spoke with Dr Lewin on Tuesday he said she was planning to call us on Tuesday as she had promised. We did not hear from her.

We want to know what she thinks of our plan to go to Stanford. In particular, whether she feels the same concern about a myectomy repair in the valve-saving option. The alternative is a hemi-kono.

On Saturday, we received a CC'ed clinic report addressed to our primary care pediatrician. This reiterated our discussion with her 2 weeks ago but also added some commentary:

"I would try to avoid a Konno or aortic valve replacement if possible. The outflow gradient would need to be assessed after this operation to determine whether or not further work needed to be done because of the size of teh aortic valve and residual gradient. I feel that there are two potential plans at that point. Both of them would be to do a type of Konno procedure. The question if the aortic valve is replaced, whether it is done with a bioprosthesis, a mechanical valve or a the pulmonary valve from the Ross procedure. Ultimately, which one is undertaken may depend on the anatomy that is seen in the OR.

....it is difficult for us to predict whether or not it is better to do a bioprosthetic, mechanical valve or Ross-Kono should the aortic valve be problematic after the initial attempt to alleviate teh obstruction. In either plan, further operations down the line would be needed. Additionally, it is possible that at some point heart transplant might be necessary if the left ventricular relaxation remains impaired or becomes progressive."

We do not know whether this is her final advice to us or whether she is still planning to call. Josh thinks she is and we should give her till the end of the week.

I do not like seeing that "heart transplant" phrase but we know that is always an option for kids with CHD's when the defect is not reparable. In fact, some people feel that many kids with complex heart defects may require a heart transplant as adults. Still, this is a just one of many outcomes and at this point it is far more likely that the LV hypertrophy and left ventricular function is restored once the obstructions are relieved. Right now, Wren's left ventricle is like a body-builder's muscle - thick and inflexible. Heart muscles need to be lean and strong - more like the yoga or pilates version. Body-builder ventricles don't relax and fill completely with blood so they don't work as efficiently and if this continues to progress he would need a plan Z.

Mum has booked her flights BUT
we haven't booked flights or accommodation for Stanford. I have priced the options and chosen a few hotels within 10 minutes of the hospital. We are waitlisted for Ronald MacDonald House (which is free but vastly oversubscribed for the number of families hoping to stay there).

It looks like we will have to pay about $750 for flights for Wren, Josh and I and about $120 a night for accomodation which is not bad considering the price of 'inns' and Best Western's down there. I am hoping to get a room about 6 minutes from hospital at a place that has a shuttle. This will be for the first week. At that point we may fly Mum and Frost down and just pray we get into RMH or find an apartment that fits all of us. All of them have heated pools so Frost could swim all day :)

Mum is due to arrive on October 25th. We should leave for Stanford on November 5th. Pre-op appointments start at 7.30am on the 6th. We plan to have a car for the first few days so we can have a bit of R&R before surgery.

We are going to trust the surgeon to make a plan BUT
we expect that if the valve looks sufficient for the next 5 years, Dr Hanley will try to save it by performing a myectomy repair below the valve and a supra-valvar patch. If it looks like it will fail, he will perform a kono procedure with a mechanical aortic valve requiring anti-coagulation therapy for the next decade or until it is outgrown. That means coumadin.

My gut-check says we are doing the right thing BUT
I feel a lot of anxiety and 'what ifs'. What if Dr Hanley does the myectomy repair and Wren is one of the 20-30% of children in whom the obstruction regrows at the site of the repair? He will need another life-threatening open heart surgery within 2-5 years - one I could have avoided if I made the right decision.

What if we stay here and Dr Cohen does a kono valve replacement and Wren has adverse effects from Coumadin or has a complicated recovery and we keep wondering whether he could have done better, had a better outcome in Stanford? Think how much money we would save being here? Josh could work a bit more, Frost would have us around when he needs us.

We just don't know and nobody can tell us the answers for how this will or would work out.

I am doing okay BUT
I am having trouble sleeping. If Josh wakes me with a snore - even a mild rasp like a wave pulling back on a pebbled beach - I am AWAKE and READY and start to think everything through. I start to make packing lists for hospital: rescue remedy, historical romance, hand lotion, new toys to lure Wren into joy. Plus, I feel a low grade anxiety off and on during the day and a horrible guilt for what Wren is going to suffer. I just love him to bits and every time I see his joy at 'untent' or a book or playing chase I feel a quixotic terrible happy-sad for him.

As with any parent, I dread making him suffer. I dread breaking the now-solid sense he has about life. He is just at the stage of being a little king. He thinks he knows exactly when things happen, where people sit, when Daddy comes home, who is at the door. I have this nightmare when I imagine his fear and horror waking up in hospital with stuff in his arms, tied down and in pain. Its just like those X-files of alien abduction. Who took my life?

I feel awful when he runs up to me or Josh and says "owie, kiss it better!" and I kiss and he says "all better" but I know I won't be able to make it better that time. There is a tiny little pink scratch on his hand he brings to me many times a day - he points to it and says "owie!" and makes a fake whimper. I kiss and it looks suspiciously and says "all done" and looks pleased. Its a tiny pink healed scratch goddam it. How is he going to cope with the wounds of surgery?

So, I am living on the edge of a sense of horror in other ways. Sometimes I can't make everyday things matter. Its like "oh, we need to do what?" And at night I have strange dreams about things like grizzly bears lurking in puddles and cars which drive on the edge of sheets of ice. Lurking there are all the questions we're not supposed to think about or mention - the 1:20 children who dies in heart surgery. The risk associated. The risk of stroke etc. I won't stress you further. You are not supposed to personalize the statistics close up.

But its not a soap opera and I am rather fond of those at the moment. I can't read anything challenging. I can't be bothered with long conversations and the highlight of my day is lying on the couch while Joshua gives the spot beneath my big toe a good rub. A simple reflexology chart says this is the spot that correlates with my adrenal gland. Go figure!

This is all normal for the freaky world of toddlers in surgery. Really, truly. But if I respond inappropriately to things and shirk responsibility - consider it a symptom. My subconscious is engaged elsewhere. I really don't care about everything else - except painting the kitchen. I can't wait to be surrounded by avocado-lime-green-wicked-bright-pistachio.

Edited to say:
I spoke with Dr Krabill's co-ordinator and she intends to call us in about half an hour.

5 comments:

tamusana said...

hey Shannon,

You've made this loyal reader cry :(

For what it's worth: try not to drive yourself batty with the what-ifs... my gut feeling is that your "gut-check" is very reliable; there's bound to be an element of self-doubt no matter which way you go. (Observation from the peanut gallery: although money is very important, and Frost's stability and proximity are extremely important, those are not going to be the factors on which you base your decision about the surgery. So don't let them creep in and assume undue importance.)

I hope Dr Krabill has chimed in by now, so that you can slot in her opinion to your rather bewildering set of pros and cons.

Thanks for laying out the situation so eloquently. It's comforting to see how phenomenally well-informed and balanced you are....

love
Tam

Laura said...

Shannon,

I'm very impressed with all you've been able to absorb and summarize.

Regardless of your decision, there are always unknowns. All you can do is take the information you have, and make the best choice you can. I know I am way oversimplifying it, and it's a lot easier to do with non-CHD things. It's also a lot easier to talk theory when it's not your child being discussed.

I too have some of the same concerns you do about dealing with a child and making things better. Kissing that bump on the forehead seems like something so easy compared to what is to come with surgery. I'm just thankful the surgery has come as far as it has in the last 30 years. I'm thankful these talented surgeons are able to give our kids a chance that they most definitely deserve.

Your family is in my thoughts and prayers regularly.

P.S. How to you determine high volume versus medium volume?

Shannon said...

Thanks for your empathy Tam. I think my internal dialogue is cracked half the time but I guess I would be insane not to worry and wish to change things.

We have not had any response from Dr Krabill. Either something very urgent came up, she is waiting for some info or 'half an hour' means something different in medical jargon. Like, a few days.

Laura, I determine hospital volume by asking the surgeons AND by referring to the US News survey of Best Children's Hospitals in the Heart speciality.

That survey is based on data reported to the association of cardio-thoraccic surgery (something like that) which both hospitals supply.

http://www.usnews.com/directories/hospitals/index_html/specialty+IHPCARD/state+/page_number+1/page_size+10/sort+/name+/metro_area+/zip+/distance+/detail+more

According to that survey, Seattle Childrens did 77 cases of moderately to very difficult heart surgery versus 268 in LPCH. Dr Cohen told us that they would do approx 400 heart surgeries overall this year - which qualifies as a moderate size institution in his words. LPCH has a reputation as a high volume center (as do all the top ranked centers in the survey).

I don't really base to much on the rankings. Dr Lewin claims they are a "popularity contest" because they factor reputation in (qualitative measure) BUT many scholarly articles have shown the association between volume and outcomes in pediatric heart surgery, so I trust that information.

- Shannon

Heather C. said...

Shannon,
This was a beautifully expressed post. A second reader confesses to tears! You're making it through this with clarity and love that is a gift to your family.

For what it's worth, and to oversimplify an agonizing period of weeks, we had a similar
"waiting to hear the results of her research" experience with Dr. Krabill. That precipitated our switch to Dr. Lewin. I am hopeful that she gives you some insight soon.

Thinking about you lots,
Heather

Shannon said...

Heather, I didn't realize that was a reason you switched.

Its so difficult to get it all from anyone. I mean, I respect that she may need time to give us useful information but ultimately we need to be kept informed of the timeline.

I never did hear back today. Sigh.