Thursday, March 22, 2012

Slight reprieve

We spoke to his primary cardiologist last night and have a reprieve on intervention.  Basically, he said that in young children who are too small for the smallest adult size valve replacement the decision on when to intervene is a matter of balancing risk.

The risk of any procedure on a child who has had multiple surgeries and caths vs the risk of an "adverse event" due to the untreated stenosis.  Adverse event = passing out or having an arythmia / heart attack.

Apparently, the risk of 'bad things happening' doesn't increase suddenly once you reach the threshold for critical stenosis.  Instead, its a steady increase. 

However, there is no cure for the AS that is either permanent or risk-free at this age. 

So, we get to make a judgment call balancing the risk of leaving the AS to progress vs trying a cath on an aortic valve that is already bicuspid, has had prior caths, has scar tissue from OHS repair and sub-aortic resection.  OR going to OHS for a valve replacement that in itself creates a more difficult replacement event in future.

We have decided to wait 6 months (and make an overseas trip) with our friend the critical aortic stenosis. 

I asked if it was crazy and the cardiologist says he thinks that will be fine.

We checked heart wall and heart size and its only minimally enlarged so apparently that is reassuring as they would not expect sudden changes in 6 months at this age.

Tuesday, March 20, 2012

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.

Tuesday, March 13, 2012

Irons in the Fire

Its a week of rain, cold rain and dark skies.  We're all exhausted because daylight saving started last night and we feel as if we have jet lag.

Wren is sick.  He has a wet cough and a mild fever and is making up for it by watching lots of Regular Show and Minecraft.  Unfortunately, I still have work to do and Frost to run to school so he is being dragged around in pajamas and slippers with some treats like Jamba Juice and sweet tea.

Beezle is bored, missing his walks, and Frost is taking the opportunity of the rain and lethargy and distraction to do less homework than he should be.

I'm going to talk to him about that tomorrow, right?

Right now I am sitting here no the couch with my dog asleep next to me.  Beezle is a creature of habit, requiring one of us to sit on the couch and watch TV with him.  I'm watching DEXTER Series 4.  On the table is a recently finished chess game, a thermometer, a bottle of honey cough mixture and the latest White Dwarf magazine.  From time to time Wren coughs from the other room. 

Josh is watching soccer commentary, a steady murmur from the office.

The dishwasher is swishing and I'm in genealogy detox for this evening.  Unfortunately, I got this genealogy buzz when living in a country in which I have close to no ancestral history.   If I was in South Africa I could run up to the National Archive in Pietermaritzburg or England, I could easily visit a cemetary or church repository.  Now that I am working on the less documented people - those who immigrated at a time when documentation was less thorough, it is harder to follow their trails.

Last weekend was Beezle's first birthday.  We made him a cake out of bread, peanut butter and ground lamb.  Here is a picture of him blowing out his candle.  Now its time for bed.

The boys sing Happy Birthday to Beezle who
sniffs his heart and cross-bones cake.

Wren and Beezle at the Edmonds Dog Park before he got sick

Beezle is a good climber.   It was bitter cold.

Sunday, March 4, 2012

Wren at the dog park

Wren at the dog park.  Taken by Tara.

Monday, February 27, 2012

"When in the Big Bang were Dogs Created?" and other questions of note.

Its been a long ten day winter break with the kids home.  They have had fun but I can't say we did anything spectacular.  We kind of lurked around in the low light and stayed out of the rain, when it rained, and the wind, when it winded.  That was quite often.  We ate lots of cookies, drank coffee (well, I did, not the kids) and generated a mountain of laundry.

Frost had a few days of rolling playdates and sleepovers. 

Wren played lots of minecraft and chess.

Everyone whined and complained at least once.  If they didn't have something to complain about personally, they complained about someone else complaining and those eddies of discontent just about did me in from time to time.

Joshua took a few days of and played quietly on his laptop, his computer CPU (we hope its the CPU) being broken.

Beezle is fat.  I am not going to say more about it other than both the pets want to eat more than they should.  Kitty has taken to foraging for leftover food from the stovetop and I had a disgusting experience today where I snacked on a piece of toast Wren had leftover from lunch - it had cream cheese and smoked copper river sockeye on it - but found it a bit soggy so I threw it away.

"Kitty really enjoyed Wren's leftover toast" Josh mentioned, hours later.

So, I had eaten kitty saliva.  Tasty.

In other weird news, I was walking at Magnuson Park with Beezle and Wren when we met another pair of Dachshunds and walked with them.  The young women who owned them was named Amy and while we were walking alongside her Wren asked "When in the Big Bang were dogs created?" and rather than allowing my rather rambling "around the time humans came into being" explanation, she launched into a detailed exposition of the origin of dogs 50 million years ago and how they branched off from other furry critters and then from wolves.  Wren was not expecting so much information.

"How do you know so much?" I asked. 

It turned out she was an archeologist doing her dissertation at UW.

AND

She was working in Indonesia.

No, not just Indonesia, but on the very micro-sized dot of an island I lived on for a year long ago.  Its crazy that she had just returned from Banda Neira in September!   She had a picture of Gunung Api on her smartphone.

So that was weird.

I thought I had cracked my tooth but it was just a guava pip wedged in a crevasse.  Wren and I both love canned guavas from Mexico.  These were a favorite desert of mine growing up and I have recently discovered them in Safeway.

Frost needs a book to read.  He's all hooked on digital media.  If he gets a moment he watches Yogscast videos on Youtube instead of reading.  I am dismayed and wish I didn't have to police everything.  Screens are everywhere. 

Wren says "I need to poop!"  (he tells me because he still needs help wiping) and then keeps on saying "I am not ready yet!"   After he's been in the toilet long enough to hardboil an egg I check on him to find him all done but playing iPad on the toilet!  In fine silence.

Argh!

Anyway, at least he draws and plays chess and shoots the air and makes popping noises.  He is also very interested in faeries and potions.

We were very impressed by the local parochial (Catholic) school when we interviewed there last week.  We think we will apply and hope Wren is accepted to give us the choice to send him there.  He would probably become a bit Catholic but not entirely.  He is quite adept at making up his own epistemology.  Here is his theory of emotion:

Wren:  You know the body seasons?
Me:  What?
Wren:  You know the way you feel things in your body, different things... like the body SEASONS?
Frost:  You mean 'emotions'.  They are called emotions.
Wren:  Well, yes... emotions.  Emotions are body seasons and they are ruled by a heart which has pipes to different parts of the body and they have core alliances where the energy flows, it flows through the popes.  There are different parts it flows for the sadness and parts for the angry and parts for the different motions. 
Me:  How do you know this stuff, Wren?
Wren:  I know this because when I grow up I am gonna be a scientist of all the body stuff.

That is as well as a Tibetan Buddhist and a minecraft player.

Its late, I just wanted to catch up a bit and now I am :)

Wednesday, February 15, 2012

Overbeezing

Frost coined a new word this morning - overbeezing.  Its used to describe the behavior when a dog leaps on a reclining person and goes crazy with love, licking them, standing on their face and trying to poke a tongue in your ear.   As in:

Frost:  "Oh, hold him Wren, hold him... we have to stop him from overbeezing me!"

We are all well.  I am working more than usual for a few weeks.   In the circus act of our life, I am also balancing a seal on my head, planning vacations with family for later in the year (shall we go to the Olympics or the Rockies?) and trying to teach Frost good test-taking behaviors.

For Valentine's day we are eating Jelly Beans in a little tray that has the colors separated.  This is the kind of thing that causes a child great joy and wonder!   All these little Jelly Beans for me!   Last night, for pre-Valentine's, I bought some steaks for Wren and Joshua and Beezle and even ate a bite.

"Mum, Beezle was slowly and sneakily pushing me off the couch and I didn't even notice until I fell off!" says Frost. 

"I am the Beeze God," says Wren.  "I can make any amount of Beezles at any time."

The dog is still very important.

"When Beezle barks at other dogs, Frost, his is just saying hello!  He is not being mean."
"No, Wren, dogs say hello by sniffing!"
"Oh, okay" says Wren.

I am going to become late if I don't stop typing about now.   Frost and Wren are advancing towards the kitchen singing "Jelly bean, jelly bean" to the tune of 'we will, we will, rock you ... rock you."

I should move fast to advocate for breakfast!

Wren shouts  "DUDE!  There are enough Jelly Beans for a week!  DUDE, its in plastic!"

Wednesday, February 8, 2012

That is the WORST THING

Wren is such a worry-wort.  This evening, as I bent to kiss him goodnight he whimpered and moaned.

"What's wrong?"  I asked him.

"A splinter in the eye is the WORST thing," he said, clutching his eye dramatically.

"It is.  You don't want a splinter in the eye.   But it won't happen to you because you are right here and I am keeping you safe."  I said, placatingly.

He whimpered and groaned.

"It is so bad....an eye splinter!"  he thrashed around a bit in bed.

"Where did you get this idea from?" I asked, hoping to blame popular culture [aka Adventure Time] or Joshua.

"I just THUNK it."  He said, disarmingly.  "Now I can't unthunk it from my mind."

"Its okay," said Josh, coming in to sing the next song.  "You only get splinters like that from woodworking and that's why you wear goggles when you do woodwork.  When I do cutting with a saw I always wear safety glasses or goggles.   Just this weekend I did cutting wood and I wore goggles."

He appeared satisfied with that.

I share his worry.  Since our visit to the URGENT CARE at Children's to check for Strep throat, I have been worrying about his low blood pressure readings.  One of Wren's active issues in his heart is his aortic stenosis.  This narrowing in the outflow of the left ventricle makes his heart work harder to push the necessary blood volume to his body.   Over time, the heart grows thicker as it has to work harder (hypertrophy) and a side effect of this intensification of muscle fibre is that the wall of the heart is less elastic and cannot either open as widely or push as hard.   As this advances it is called Heart Failure and is measured in stages.  I believe that Wren has been in a very early stage of it all along as his heart is a little thicker and at times he has had issues with early pulmonary hypertension (backward failure of the left side).  Anyway, low blood pressure can be a symptom of heart failure.  Wren's BPs may be normal for him but to me it looks as though they are drifting downwards.  18 months ago I have a reading for him of 100/60 while the doc in Urgent Care got 90/50 and 85/45. 

So, I guess I have to buy myself some safety goggles to prevent any Bad Things from happening and try and keep my center for another month or so as we prepare for the next cardiology clinic.  Hopefully, there heart things will be more or less clarified or at least taken out of my hands by someone who knows which splinters in the heart are the worst ones.

Sunday, February 5, 2012

Sore Throat and Sunshine

We are having 3 days of fake spring in Seattle and Wren continues to have a sore throat.

This morning I am taking him to the after-hours clinic at the Hospital to have a strep test.  Its ironic, because his fever is gone for the first time since this started on Wednesday night but apparently this is still a good idea.

He has had all the symptoms.

Meanwhile, all this time at home with Wren has given me a chance to do some housecleaning and resume typing up the diary of my great-grandfather. 

Friday, February 3, 2012

The iPad and Tylenol cure.

Wren woke early this morning and called out "Mom, mom?"

"Yeeees" I called back, from bed.

"Mom"  he called, his voice wavering "my neck feels funny."

"Come and show me" I called back, causing baby dog (aka Beezle) to come out from under the heavy covers to see what was wrong.

Wren plodded into the dark room dragging his sleeping companions - soft shirt and big bunny.  I felt his neck in the dark.

"Is it sore here?"

"No"

"Is it sore when you swallow?"

"I haven't SWALLOWED ANYTHING today."

"Okay, swallow this water."

He sipped some of my bedside water and told me it was not sore but still felt funny.

"I have a square bubble that is thick in my neck," he explained.

I inferred from feeling his glands that his throat is a bit swollen and sore and he has a fever.   I have to do two school tours today so Josh will work a half day and do morning patient care.   Wren is doing well on a diet of iPad and Tylenol.  I am touring middle school with Frost.

Saturday, January 28, 2012

Being the Big One

This morning I am googling "how reseat toilet".   The toilet in our 'family' bathroom has started leaking blue water onto the tiles.  It didn't bother me terribly until Joshua taped the lid shut with blue tape and I decided something should be done.

Josh said he will fix the toilet this weekend.    I know he can, probably, because he fixed one before when Frost flushed his toothbrush down it and it became lodged in the U-bend.   But I thought, perhaps, I could get started today and said this to Wren.
Me:  Wren, I think we could start to fix the toilet today.
Wren:  No, Mommy, Daddy is The Big One.  I have to tell you, you are a little bit smaller and so Daddy does the big jobs.
Me:  Oh?   But.... erm
Wren: You do 'portant work and be with school and Beezle but Dad does fixing the house and working with METAL and SAVING FROM FIRE.
Me:  What big jobs do I do?
Wren:  In a 'mergency you could cut down a tree!   And you can also go BIRDWATCHING!

This conversation goaded me further in my quest to unseat the toilet.  But truly, it is hard to be the big one with Wren about.  I fear that once I unseat the toilet I will face a gaping maw of poop which will distress both of us.  Despite newspapering the room, there may be some hands on work required that would be better done with two Big Ones present.

I am going to try and reposition myself in a powerful domestic role without getting my hands dirty.   I can shop for supplies for the worker of metals.  According to the web, he might need:

Tools / Materials (See Below for Applicability):
  • Appropriate wax ring (with a sleeve) replacement
  • Appropriate toilet floor flange replacement
  • Appropriate flush valve replacement
  • Power drill with the appropriate drill bit (to drill through any stubborn screws)
  • Carpenter's level
  • Adjustable wrench
  • Screwdriver
  • Locking pliers / Channellock® pliers by Channellock, Inc.
  • Caulking gun
  • White caulking tube (that is waterproof)
  • Putty knife / joint knife
  • Teflon tape / plumber's tape
  • Food dye
  • Penetrating oil (for loosening)
  • Cloths/rags
  • Scrap cardboard (to lay toilet upside down)
  • Tarp (to lay toilet upside down)
  • Wood shims

  For now, I note.  I am not The Big One.  I am the domestic sidekick.