The Call

During the last week, as we waited to hear from the cardiologist, I decided in my head that Conner has been fine for six years, there are risks to heart surgery, and there are so many unknowns with doing surgery, so they would not be recommending surgery.  Well, I was wrong.  Somewhere deep inside I knew I did not have all the information, but it got me through the week.  Yesterday, I spoke with our cardiologist who had consulted with several other cardiologists and surgeons.  They suggest surgery.  Things I had not understood, or chose to ignore:

• collateral vessels (like the one supplying Conner's lower body) are not meant to be the main supply
• they are not equipped to do so
• they are twisty, turny, tangled, long, and not very efficient
• they can develop clots
• they can get infected
• his lower body is most likely not getting enough oxygen rich blood, which could explain his inability to run more than two or three steps, his lack of coordination, his decreased energy, and possibly a lot of other things we have just attributed to Kabuki syndrome.

Before we make a decision, they want to do a few more tests, and have us talk with the surgeon about all the options, details, risks, procedures, unknowns, etc.  We are scheduled to do this on October 26th.  It will be a full, long day at Children's Hospital.  We will keep you posted.

Lipstick

 . . . or, whiteout.  Same thing, right?

One Amazing Boy!

About a month ago, Conner and I went to Children's Hospital for his annual check-up with his cardiologist.  He has a bicuspid aortic valve, which is not a huge concern, it just needs to be watched to make sure it is functioning properly.  Worst case scenario, he could need a valve replacement in his 40's, but many people live forever with no treatment at all.  So, we were in the room, Conner watching a movie, and the ultrasound tech conducting an echocardiogram.  The tech leaves to get a doctor.  I knew something was not quite right.  Of course, they cannot say anything, and I sat wondering what was going on, trying to look at the images on the screen, but did not make sense of anything.  The test was completed, we were told the attending doctor would call us to discuss the results, and we left.  (Conner's cardiologist was on maternity leave.)

Later the same day I received a call on my cell phone from Conner's doctor - the one on maternity leave.  Then I really knew something was wrong.  She explained that it appeared Conner had coarctation (narrowing) of the aorta, and wants to do a cardiac MRI to confirm.  Keir and I spent the entire evening reading about this condition, and preparing ourselves for what seemed to be (to us at least) a very serious condition.  We were prepared.  We could handle this.  It could be fixed by a tiny catheter. 

Today was the MRI.  In children, MRI's require general anesthesia, and a breathing tube.  Conner was brave.  Cayden and Allison were cared for by several awesome friends.  Mom and Dad were brave.  That is, until our cardiologist (now back from maternity leave) walked in and said, "We did not find coarctation.  We found something very unusual, would you like to have a seat?"  I really wanted to say, "NO, I don't want to sit down, and I don't want to hear anything unusual about Conner!  This poor kid has already been through enough!!"  But instead, I just quietly sat down and listened.

Conner has Interrupted Aortic Arch, type B. She drew us pictures (below), and I stared in disbelief.  How could we have gone SIX years without knowing this.   She doesn't know.  Nobody knows.  The only cases she has seen or heard of required surgery immediately after birth, because the lower body does not have a way to receive oxygen rich blood, and the babies go into shock.  Conner is a miracle.  His legs have been receiving blood through a collateral vessel.  She has never seen this before.  What do we do?  She doesn't know.  She is going to consult with the team of cardiologists and get back to us.  For now, she said Conner can do everything he normally does.  Even though she cannot understand it, the blood pressure in his legs looks okay.  So, we are waiting.

Typical

Conner

We are told that we are never given something we cannot handle.  

Conner is one amazing boy, and we will get through this!

Soccer

I feel bad I don't have more pictures, since there are only two weeks left, but really, these games just have to be experienced.  If anyone has ever seen a bunch of four year olds playing soccer, you will know.  It is hysterical.  The boys are more interested is seeing friends, and wearing their soccer gear than they are with making contact with the ball.  Conner is adorable.  He does not like confrontation, or competition, so he runs around, a safe distance from the chaos, cheering for his team.  Cayden is actually quite a good goalie.

When asking the boys if they want to play soccer again, they both said "Yes!" with great enthusiasm.   Cayden will be a great player one day.  However, I have reservations about Conner.  Besides the fact that his doctor has said that contact, aggressive, team sports are not a good choice for him, he doesn't really play.  So, I had the following conversation with him:

Me: Conner, do you like running?

Conner: No.

Me: Do you like being goalie?

Conner: No.

Me: Do you like kicking the ball?

Conner: No, it hurts.

Me: Do you think we should find something that you might like better?

Conner: Yes! I want to do rock climbing!

So, Conner will focus on swimming and rock climbing, and will still be able to cheer at Cayden's soccer games.