Day 2 - We Have a Plan!

Our Pre-Admit Clinic (PAC) went well today.  We have never done a PAC like this before.  Typically, a PAC for us is a series of visits (family doctor, blood work, then the actual PAC).  This PAC did all of this prep in one shot.  They told us 4 - 6 hrs and they were very close to 6 hrs.  It is really nice to get all of this done in one visit but it is tiring and a lot of information to take in.  We have a folder of information that we have to make sure we review and understand.

We were at PAC with about 5 other families and we proceeded with them from station to station.  Hospitals should do more of this and encourage more interaction between patients.  A little bit of socializing is a real moral boost.  Then there is the usual "prison inmate" conversation of "Soooo...what are you in for?"  As we know our situation is unique these unscripted conversations with other patients always keep us firmly rooted in reality.  We are typically "young" in these groups...but not today.  We met another couple who were younger than us.  This will be their 4th open heart surgery.  We may not be the norm but we aren't alone.

The Mazankowski Heart Institute:
Part of the University of Alberta Hospitals Complex

Most of our preparation today was in the part of the hospital we are most familiar with.  The Walter Mackenzie building houses many of the joint clinics that deal with both the pediatric and adult patients.  We saw several familiar faces.  The interesting things about tomorrow is that we will be in the Mazinkowski Heart Institute.  The "Maz" was under the final stages of construction when we were here 7 years ago.  This will all be new.

The most important part of today was our discussion with the surgeon and getting a specific plan and times organized for tomorrow.  We will be first case tomorrow.  We have to be at the hospital for 5:30 AM and Susan will be in the OR approximately 7:30 AM.

As I have mentioned in previous posts, the surgery will focus on two issues.

• Removing the obstruction (heart muscle) that is causing obstruction in the left ventricle.  With Susan's condition the key indicator is the LVOT.  The Left Ventricular Outflow Tract (LVOT) pressure.  If the ventricle cannot eject blood flow out of the heart; pressure builds up within the heart.  This pressure causes a myriad of problems.  The whole purpose of this surgery will be to bring down the LVOT pressure.

• The second part we got a little more clarity on today.   Susan's Mitral Valve has some unique physiology.  There is tissue that is attached to the valve and interfering with the operation of the valve.  The surgeon observed this during the previous surgery but avoided doing anything to it as the valve seemed to be operating adequately.  This time around he feels that he cannot avoid dealing with the valve.  In fact today he seemed to be thinking that the valve issue might be the bigger problem that Susan is encountering.  His first choice will be to repair the valve.  He will attempt the repair if it seems to be operating OK he will take Susan off heart lung bypass and close her up.  An Echo will then be done to see how the valve is working.  If the valve is leaking and operating poorly he will go back in and replace the valve with a mechanical valve.

One of the issues we had never discussed, previously, was what the future might hold down the road for Susan.  Although it is highly speculative before the surgery, Dr Ross provided some interesting comments.  He clearly stated Susan's best option was to have the surgery and try to get back as much quality of life as possible.  He seemed optimistic about the potential results.  He also did not hesitate to mention that future interventions may be necessary.  Although transplant may be an option, in the future, he told us the mechanical assist devices (VADs) have become so good in the adult population that he felt that was a very viable option.  He even went so far as to say that in 10 years we may see very few transplants in the adult population given how well the VADs are working for adult patients.  That was a bit of an eye opener for us.

So we have a plan and we have a time.  All things seem to be going according to plan at the moment.

The emotional side of things were rather tough today.  There were a few moments today when the reality of our experiences became evident today.  There are many memories in this building.  We had a couple of tough experiences where we were reminded of some very dark times here.  When Susan was getting her blood work done today, Susan had an infant getting her blood drawn right next to her.  Something we have encountered many times before but a reminder of the times were were here with Russell doing the same thing.  You never get used to the pain and suffering some of these kids go through.  There were lots of reminders like this today.  It keeps things very real.

Day # 2 is done.  The BIG ONE is tomorrow.