Thursday, August 14, 2008

The Games Wren Plays

I've been so focused on the heart issues that I haven't been keeping up with all the fun at home. Its still summer vacation (for those of you in Southern climes) and Wren has become very verbal recently. He speaks in sentences all the time and has a fabulous vocabulary. Just this evening before bed he said:

"Dada MOVE night-night"
"Put tain-tack in"
"Taste num num NOW"

He calls all small round things bubbles (including blueberries and grapes) and loves to order us around and claim "MINE MINE, WEN's WEN's!". He can also copy almost anything I say and makes us laugh with his funny comments. Along with the verbal explosion Wren has favorite games we must play every day. Here are the most common ones.

Make Tain Tack
Every morning when he wakes up we read books (Wren drops them on my head as I lie on the mattress on the floor) then he opens the big plastic tub with train track in it and starts to build train tracks on the carpet. He goes for all the interesting pieces, inclines, bridges, station, tunnels and tries to stick them all together. It is only a matter of minutes before he runs into trouble with a bridge and calls out "HELP, up-down" which translates as "help me make this bridge". He cannot figure out how to put the supports under the ascending track so they won't connect or stay up when he does it himself. I try and steer his meandering pieces into loops which frustrates him because then he doesn't have an end piece to build from.

The trains themselves are fun too but not the main event. We help them go up-down for a while and then they run off into the corner somewhere under the bed or cupboard and whir neglected until the battery runs down (unless I notice). Meanwhile Wren announces "tain tack away" and puts away the track piece by piece before moving on to the next thing. Frequently, I am still in the middle of the game and am a bit crestfallen by the destruction of the Gordion knot I have helped create.

HIDE! Mountain!
Wren loves to hide. He gets help to make a place out of pillows and lies there in silent glee while we pretend to look for him. When I find him he smiles and wriggles for a while and then gets indignant and says "hide, hide" again and tucks his head back in the pillow.

The other day, Frost and Wren were playing hide and Frost came running into the kitchen telling me that Wren was "hiding in a tomb." I said "what?" He explained that he had made a pillow nest for Wren that was "like a tomb, you know.. not a real tomb but like that." I was aghast and told him to not use that kind of example because he knew I was worried about about Wren going to hospital. Unfortunately, this backfired because Frost decided it was frightfully naughty/funny to joke about Wren in a tomb. A few minutes later he called me into the bedroom where he had made a sign in black texta.

The sign he placed on top of the pillow hidey hole was: HERE LIES WREN.

A teacher at our school commented that kids always play with things that worry or frighten them. Perhaps so. Frost also has always had an irreverent streak.

Here are some pictures of Wren hiding in pillow mountains.

Read Book
Likes to read books in the morning, especially books about diggers and babies doing things. He comments on the pictures and enjoys books which we have read many times before like "Go Dog Go" and "The Digger Book." He likes to hold the book himself and to turn the pages in somewhat random order often skipping pages and then looking puzzled and frustrated that his favorite images have gone.

Wren is very active and loves to rough-and-tumble with Joshua and Frost. He gets very excited if you play chase and sometimes gets excited and runs around in circles shrieking in fun. Frost and Wren feed off each other's energy and by late afternoon I feel I am herding elephants through the house. They like to jump off things (Wren jumps off the coffee table repeatedly practicing landing and saying "BUMP" before he tries. He often does bump but continues anyway. He loves to play pillow fight and wrestle with Joshua when he comes home and has a complicated series of games he likes including being swung upside down and being thrown into a soft pile of quilt. Frost has made up a game called "rock-a-dump" where he pitches Wren forward out of a rocking chair to his great delight saying "rocka, rocka, rocka, rocka, rocka DUMP!"

Here is Wren in a spontaneous display of toddler gymnastics in the living room. The pictures were taken by Frost.

Wren also likes to copy Joshua and me. This evening while I was flossing he asked for a piece of floss and carefully sucked and pulled it through his teeth saying "ew, minty!" each time. Afterwards, he threw it in the bathroom rubbish bin just as I do.

When I am cleaning he gets out the mop and starts to dry mop the kitchen while I get ready. Today he took out the wet mop and sloshed water everwhere. Doing laundry he has got the idea of putting the clothes in the washer and of pulling them out the dryer. He is very sweet and helpful when he knows what I am doing and is always watchful in case I put my shoes on or pick up keys. If I do, he rushes to get his shoes and tries to go downstairs to get in the car in case I leave him behind. Once I have mentioned going out he is agitated and waits by the door as much as he can while I emphasize "LATER" or "soon" as the case may be.

I am never going to get this posted later because its Frost's bedtime again. Josh is out tonight with his old mates and we have been watching Olympic swimming. I think I will have an early night.

Tuesday, August 12, 2008

Surgical Consult #1

Cardiology Conference Surgery Plan
This morning I spoke with Dr Lewin about the discussion of Wren's case at Children's cardiology conference.

Everybody agreed something had to be done about the outflow tract obstructions so the question was what operation to perform.

Factors in the Decision - Valve, proximity, the unknown
The decision of what surgery is best is difficult because while the sub and supra valvular obstructions are well defined we have no idea how abnormal the valve is and how obstructive that valve is. We know it is bicuspid which compromises its operation, we know the leaflets are thickened. We could find there is an obstruction sitting in the background.

Also, the aortic valve is on the small side (mildly stenotic). Wren's is 8mm at the valve while normal range for his size is 10-14mm.

Next, people were very concerned about how close the subaortic 'tunnel' comes to the valve. If it is further away from the valve you can carve away obstructive muscle but when the muscle comes right up to the valve that is impossible. BUT if you don't cross the valve and get the muscle where the leaflets attach you get obstruction after the surgery because you are leaving that muscle behind. Now, you don't want to find you that you have to do it again soon but you don't want to do something to a valve if you don't have to with young child [note: because of valve replacements, issues with artificial valves, need for re-operation when valve outgrown or degenerates].

So, what do you do to have best of outcome with as little morbidity [aka Death] as you can get? We get to balance the risk of operation versus outcome.

In this case much of that is a "gut check" decision - not data driven.

Surgical Options
The group discussed surgical options:
A) Patch above, evaluate valve, carve below.
B) Patch above, valve replacement, carve below.

By the end of the discussion everyone was in agreement that they should REPLACE the aortic valve - option B. These would be the various repairs:

1) PATCH Above the valve. A Y-shaped piece of pericardium or gortex would be used to patch the aorta where the obstruction is removed. Very quick straightforward procedure.

2) Outflow tract - KONO procedure. They would take an incision through the valve and replace the valve. There are three types of valve used as replacements:

  • Mechanical valve. A mechanical valve should last till adulthood in right size. Would then require replacement. Recipients have to be on Coumadin [why, think this sucks, why so unpopular?].

  • Animal valve on metal scaffold. No coumadin required but animal valve degenerates and needs replacement sooner. Estimate: 5-10 yrs

  • Ross-kono: Replace aortic valve with patients own pulmonary valve. This is generally surgery of choice for young children but is not indicated as well in cases of bicuspid aortic valve. Studies in past 5-10 years show that Bicuspid AV is indicative of a connective tissue disorder that does not cause the patient problems but is correlated with a higher rate of degeneration of the replaced valve [ie the pulmonary valve acting as the AV would degenerate]. Time frame for degeneration is similar to the animal valve PLUS you have messed with the PV.

They have not determined which valve to recommend but I got the vibe that the Mechanical with Coumadin was leading slightly.

What about the Referral to Hanley?
Dr L said he was interested to hear the recommendation from Stanford and that they might say "the Ross works great". He said that he was sending the packet today and has spoken with Dr H's staff who promise to bring the case to conference this week. He expects to speak with the surgeon or presenting cardiologist by the end of the week but if he has not had a response by Tuesday he will call again.

The feeling was that Wren is not in danger on a daily basis so surgery is not indicated in the next 2 weeks but a timeframe of 1-2 months, under 3 months is recommended.

Risk and Choosing where to go
I asked when to have the discussion about the relative outcomes at different centers or what the major risks were. He said that once we hear back from Stanford we will sit down with him and talk through the risks and issues in detail. He did say that the valve replacement made it "a big, major surgery" [I guess not all heart surgery is big?]. He said that at that point he will put us in touch with Dr Hanley to talk about outcomes and risks there too.

Odds and Ends
This valve replacement makes sense to me after talking it through but I am still in shock. Why does every step we take leave me in shock again? Immediately after the conversation with Dr L I went to Wooly Mammoth and bought TWO pairs of shoes. I am usually unable to buy shoes but apparently shock and dread make me decisive. I just bought them and they are both great.

For some reason I am particularly apprehensive about Coumadin. My baby is going to have MAJOR, BIG heart surgery and I am freaking out about a drug. I suppose its the never ending ness of Coumadin and the feeling of being poisoned continually. I guess I am overreacting? Right? You can tell me I am over-reacting but I just want him to come out of this not to be sad and sick forever.

Of course, my mind is also spinning out frightful scenarios in which Wren dies in surgery and I am wearing my new shoes. I think "are these the shoes I will be looking at?" like some crazy lady in a novel focusing on her hairdo while the world burns. I think, we shouldn't go to Stanford because we can't have a funeral down there! We don't know anyone. I saw an interview with an Olympic Gymnast last night and she was asked about her blog in which she shared a recurring thought that she would fall in a move on the uneven bars. THe post had fans and family in high anxiety. She said "that is just a way of working out my nerves, I mean, I didn't fall did I?" I liked that. My dreadful fantasies of shoes, funerals in hostile California and of having to counsel Frost forever are just my working out of Olympic Heart Surgery jitters.

You get to say YES here.

Monday, August 11, 2008

Enjoying the Olympics

Since last night we have been enjoying watching the Olympics. Frost was quite impressed by the gymnastics but seems very sensitive to the competitive nature of the sports. He watches with half an eye while playing pillow-tents with Wren and running back and forth to his room for new things to hide in a game he has made up [hiding honey toast, applesauce and cookies for Wren under tents made of sofa pillows] but when there is any alarm in the commentary - a gymnast falls, a swimmer does less well than expected - he stands alert and watches, asking me what is going on.

We watched the women's 4X100m freestyle final and at the end when Australia won Bronze he kept reassuring me that "its OK, they did well?" because the US won Silver and the Dutch took Gold.

This is one of the difficulties for me in watching the Games. I am not particularly rooting for the US. When Frost asks "how did WE do?" I am not sure who we are. Instead, I tend to root for Australia and South Africa in swimming, any bizarre outsider who is in the final [can a landlocked nation produce a finalist - Olympic swimmer? I will be backing them!] and then the US if there is no-one in these other categories.

However, the US Olympic coverage (and Canadian for that matter) is hopelessly myopic. The Chinese have won 6 gold medals so far and I have not even seen the sports in which they were competing. Actually, I haven't seen a Chinese athlete perform yet - this is incredibly irritating. We are watching early trials for beach volleyball and some sports Joshua and I cannot even name (like soccer with your hands???) instead of finals with non-US athletes participating. Apparently, the whole concept of excellence is only relevant if its national excellence.

The silliness of this was quite acute this morning when I was watching the Canadian gymnasts perform. The commentator said something like this "The atmosphere in the stadium is electric right now because the Chinese team are competing. They have posted some of the highest scores of the Games so far, oh, yes, over 16.1 - so our Canadian athletes are having to concentrate" All this time we are watching the Canadian performer sit on a plastic chair waiting for a score. Then we see her SIT some more. Then she whispers to her coach. Then they show the empty aparatus and the judges sitting at their computers. Perhaps the Judges were scoring the ghostly CHINESE team.

Argh. I am so frustrated. 700 channels and my father in South Africa gets better coverage than we do. Can you get Skype TV?

No spill bubbles

Wren has been playing with the no-spill bubbles in the kitchen this morning. He dips the tiny wand and then presses it close to his lips and goes "pfffft" and two or three tiny bubbles float out.

He is thrilled. This is the first time he has managed to create bubbles. Whenever Frost or I approach him he grabs the container and wand and says "MINE!"

Unfortunately, it seems he has been holding the bubble wand very close to his mouth because between bubble blowing he sometimes manages to create very large bubbles on his lips and smaller ones on his chin.

I told him to get a cloth and he is now having a drink of water to dilute his soap-for-breakfast.