We spoke with Dr Hanley a short while ago and are now sitting in the hospital roof gardens. Joshua is trying to sleep on a low wall and wishes we had packed a pillow. The hospital is very very busy - all the seats in the pre-op waiting area, the CVICU waiting area and even some halls are full of families waiting. Its hard to find a spot to camp but we may try the parent room near the PICU later.
Dr Hanley was very reassuring. While we waited for him he told a huge family gathering (grannies, pink-eyed mother, couples clutching each other in worry and relief) that their daughter's valve replacement had been a great success and that the valve should last her at least 10 years. She was finished in the OR but they were holding her a bit while they 'finished up' so that the staff in the CVICU had time to clean the room.
The 3 hour delay Wren faced was due to the CVICU to Ward room shuffle. In the end our anesthesiologist got involved and an administrator and the rooms are moving.
What Dr Hanley Said
Dr Hanley said their plan is to save the valve and do the sub and supra valvar resections. He was very pleased with Wren's MRI yesterday. Apparently they had expected some of this EFE (scarring) which indicates more serious damage to the ventricle. They were very pleased to see none.
He feels that saving the valve is the best path for now because a valve replacement of any kind is a much more major surgery - doing the kono to insert the valve.
IF it is needed he will put in either a mechanical or a pig valve. PIG VALVE???? you say? Didn't you exclude that option? Apparently not.
Dr Hanley feels that at Wren's age they have to balance the years before reoperation with each option. The mechanical is usually good for 10+ years at Wren's age - requiring replacement at the growth spurt of puberty. The pig valve may last 5-10 years, depending on metabolism. The pig valve does not require Coumadin. The mechanical does. So, which is better depends on a bit of a judgment call. Of course, no Coumadin is better but a re-operation in 5 versus 10 years is not good either.
So, we are going to wait and see "Wren's anatomy".
Timing
Wren was taken into the OR around noon. Dr Hanley's part of a the resection and repair surgery takes 2-2.5 hours. Then he will come off bypass and they will test the repair with echo and cath/pressures. IF the gradient is <30-35 then surgery is over and he is closed and brought out of the OR within an hour or so. We may hear from Dr Hanley around 4.30pm.
BUT
If the valve repair does not work or looks problematic, he will let us know he is doing the replacement. That is a more 'major' surgery and takes lots longer. We will know if that happens - again, around 4pm.
Survival
Josh and I are rather jet lagged. We have been up since 5am and did not sleep very well. We didn't eat or drink this AM (grabbed a coffee and a bit of day-old bun while Wren slept) so by 12.30pm we were woozy. We have now eaten and I think I may head down for something sweet before reading my book to pass the time. By the way, for you Californians, I really like the weather here. The sky is brilliant blue, its in the high 60's and everything is bright and flowery. People speak another language (spanish) and I feel as if I am on one of the medical tourist tours to India. Even Whole Foods has different products.
Omens and Anecdotes
Having your kid in surgery can drive you loopy. This morning I was wary of omens. Joshua said that the fact Obama won is a GOOD omen. Here are other signs I have tried not to get excited about:
* I saw a BLACK squirrel. Josh googled it and there is a colony of black squirrels here. Wren loves squirrels but black is ominous. Is the black squirrel good or bad?
* I couldn't find hedghog puppet in the morning. Wren loves Hedgehog. Josh said we should go without hedgehog but that would have been bad so I hunted and found him. Hedgehog is in the OR too.
* The PACU are all excited because one of the nurses son is called Ren (with an R).
* During the long wait Wren drove his stuffed animals around in a red wagon. GEE-raaf, Untent, edge-og, KApi and Big animal enjoyed seeing the train and helping save tiny snails in the graden.
* The train on Level 1 has been replaced by a NEW train with lots of buttons to press that make horns, bells, announcements and lights flash.
That Surgery Soap
Some of you have asked whether we received that soap to wash Wren in the night before surgery. Yes, it was not fun. He did not like bathing in a strange and slippery bath. He cried. The instructions are to rub the soap into the body from neck down and then scrub/lather for 5 minutes. I think I managed three minutes. Wren did not like it and I didn't want to upset him because he was quite grumpy after anesthesia yesterday.
Now, getting coffee.
Thanks so much for all the comments and emails of support. It means a lot to know so many people care about Wren and us and are sending prayers and pretty-thoughts to us. I am sure they help.
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