Critical Aortic Stenosis (again).. Maybe

I am drinking carbonated pomegranate juice, from France, orzo salad, sushi and some pesto.  Wren has deviled eggs, sushi and madelines.  Josh has a Metropolitan market caesar salad.  If we can't kick this heart defect at least we can kick back and enjoy some fancy victuals.

To cut to the chase - Wren's first cardiology clinic in 15 months had mixed results.  It could always be worse but his aortic stenosis appears to have advanced from moderate to critical.  Critical is 50+ gradient over the valve.  His was 55.  Last appointment it was 45.

Now, that is where the clarity ends.

Dr Conwell was very amiable and calm.  He said:

1. The mitral valve looks about the same.  It has mild regurgitation, no evidence of pulmonary hypertension and is abnormal.  It is not a parachute valve but has short chordae and abnormal, restricted, motion.
2. Wren has mild left ventricular hypertrophy (thickened heart), we knew this, but he does not know if it is worse.  This is significant because they would expect some thickening if, as the numbers suggest...
3. The aortic stenosis has gone from moderate to critical and we need to talk intervention.

Actually, he said that he will review with our primary cardiologist and look at the images again to judge if this is a genuine increase or an anomaly due to angle of view.   He will call us within a week or so to discuss what they think.

They want 24 hour halter study data - Wren is wearing the halter now.  It is a set of electrodes stuck to his upper body to measure his EKG all day.  This is because Wren has left bundle branch block as a result of his last surgery - the electrical impulses are already a bit abnormal because of the damage to the bundle.  They want to know if the damage was more widespread and would indicate the need for a pacemaker.   This is not really a new thing, but if Wren needed surgery they would want it put in at the same time.

They did some chest x-rays to see if his heart is enlarged.

We will get some results back in a few weeks from the halter test, which will last until tomorrow afternoon.   Josh is teasing Wren that he is like a robot.   The nurse told him he is like an astronaut because they have to wear them all the time they are in space.

IF it seems the numbers are raised, we will repeat the echo in 2-3 months and also present to the cardiology conference.  He suspects they would recommend a cath lab intervention to try and open the bicuspid aortic valve leaflets further.  Other than a replacement, the cath lab might work as well as open heart surgery for this repair - he says.

I would want a second opinion from Dr Hanley's team and have said this.

So, we wait for:
1) The outcome of the discussion between Mark and Jeff.
2) The results of the chest x-ray.
3) The results of the halter-monitor
4) Any comments from the cardiology conference discussion.

We are disappointed but not reacting too much, yet, as there seems to be a lot of vagueness in the air.  Something bad is suggested.  Chocolate pudding is indicated.

Quick little Echo

Wren had a fever 3 days ago and still had one last night. It was never high - at most 100.6 - and he said he had a sore tummy so I expected it to be a virus. Anyway, since he was still getting this fever Jenny called us in to Cardiology Clinic. Wren had a quick echo (was very good) and Dr Olson examined his scar.

The news was good. His incision is healing nicely and his echo showed the pericardial effusion had gone. There was no fluid around his heart or lungs. Yay!

He is now napping.

My only complaint is that he is waking at an unholy hour. For the last 4 mornings wakeup has been at 4.15am, 5.08am, 5.00am and 4.20am this morning. I am totally wasted and using all his naptime sleeping.

Mum has been waking with us and is wandering around with bags under her eyes and falling asleep whenever we go out in the car. A couple of days ago she fell asleep playing with Wren on the couch.

I don't know why he is waking completely so early but I wish he would not.

He still shows signs of anxiety. He fears being undressed, is very cranky about getting his way (probably because he has had so many people waiting on him hand and foot during surgery and recovery) and has not been left to fuss or cry at night (again, due to cardiac concerns and empathy post-surgery). At times, I call him a tyrant and plot his overthrow into the realm of healthy baby. He does not like me to be distracted and tells me what to do "NOW!"

Broken Peni
Wren calls his penis a "pe-nee." During diaper change he told me that "Wren has pe-nee" and "Frost has pee-nee" and "Daddy has pee-nee" and "Granny has pee-nee" but "Mummy has no pee-nee."

When I asked him why Mummy has no pee-nee he said "Mummy broke pee-nee." So I am Shannon of the broken-penis.

Frost and the Big Word
At breakfast, Mum asked after Laine and Nate - our old preschool friends who moved from Wedgwood to Norway. I mentioned that they had visited over summer and Nate's Dad had had a heart attack in the gym but was very lucky because "they had one of those machines that goes zap zap" [I was miming because in the fog of sleep deprivation I can't remember big words].

"A defibrillator?" asked Frost.
I snorted in my food.
"Yes," I said. "How do you know that word?"
"I saw one on the Simpson's" said Frost, "and also at Camp Orkila. They had a picture of a broken heart and underneath there was the machine and it said DE-FIB-RILL-A-TOR."
"Oh" I said, still laughing.
Frost smiled, pleased at the effect of his big word. "On the Simpsons they have electrocuting irons," he added.

Cardiology clinic coming up

Wren has his next cardiology clinic visit at Children's on the 23rd. He will have an echo, EKG, general exam and a consult with his cardiologist. In particular we are concerned to see whether there is any increased turbulence around his LVOT, aortic valve, coarctation and descending aorta.

We also want to have his left leg pulses checked to explore this swollen leg business, update his meds since he has gained many pounds in the past 2 months and ask about the possibility of a trip to California in summer.

I am hopeful since he looks so good but I can't help but feel a flutter of panic at putting him down on the bed for his echo. Not only does he wriggle and fuss immediately, I just hate seeing those rainbow colors on the image where there "should" be nice clear red and blue (laminar) flow.

I spoke to the ped today about his leg which is still larger. She said my hypothesis about it being a combination of some venous constriction post cath and congestion from the shots is plausible. She recommends one shot at a time in future.

Anyway, we shall post an update on Monday afternoon.