Crossing the Line: Advocacy vs Abuse

In recent years I have become a huge proponent of peer support in health care.  We have been lucky enough to have been influenced by many other families who are going through circumstances similar to ours.  We need quality role models to help us all become better advocates for the people we care for.

There are many character traits in people who I have seen who I believe are quality advocates in health care.  A relentless thirst for knowledge and information.  Persistence in the face of many obstacles.  Empathy for the person they are caring for and exceptional skills in negotiation to convince our teams to listen to our concerns.  The one trait that is rarely talked about is that of basic manners that we were all supposed to be taught as kids that some think they can be excused from just because they are experiencing an adverse situation.

I wrote this post after I read a blog a couple of weeks back from a noted blogger, Carolyn Thomas, who has a phenomenal blog (Heart Sisters) that contains a wealth of well researched topics related to women's heart health.  The topic of this blog post was about the poor behaviour of some patients and why it isn't an excuse to abandon some of the most basic manners we were taught as children.  It's a great read and applies to many other aspects of our lives.

Heart Sisters: Being Sick Doesn't Excuse Being a Jerk

I read this blog while I was enduring a "loud mouth" in the Pre Admit Clinic while we were preparing for Susan's (my wife) heart surgery earlier this month.  Apparently this "person" thought the more obnoxious he was the less time he would have to wait.  I've seen this kind of thing before.  It is surprisingly common.

In our journey through the health care system I have seen many examples of reprehensible behaviour by patients and families.  They range from terse words to what I would consider outright abuse.

I have seen parents place webcams in their children's rooms to "spy" on staff.

I saw one "Mom" verbally abuse staff on a regular basis.  The abuse was so bad, and so frequent, that nurses would routinely leave this child's room in tears.  It turned out that this "Mom" was a crown prosecutor and used her considerable skills to prosecute the hospital staff on almost a daily basis.

One situation I found particularly disturbing.  During one of our stays Pediatric ICU we observed a parent who's child had just come out of surgery. As it got later in the evening the parents were preparing to depart the ICU and head home for the night.  Without warning the Mom absolutely "lost it" on her bedside nurse.  This took a lot of people in the ICU by surprise as everything up until that point was very amicable.  Without any provocation there was this sudden explosion of vitriol.  After the "dust up" the parents quickly departed for the night leaving the staff puzzled and wondering "what was that all about?"  I knew what it was.  The parents in a premeditated manner were sending a message before leaving their daughter's bedside.  "Don't you dare leave our daughter's bedside...or else!"  A not so subtle bullying tactic. Scripted and staged for maximum benefit.

It is true that many of these families were dealing chronic or life threatening health issues; but does that excuse the abusive behaviour?  Not at all.  In fact they risk alienating the people who were in the best position to support their family through a very difficult time.  They also isolated themselves from other families who could have provided much needed support.  Instead, they chose a very unfortunate path.

The examples I have cited are extreme.  However, it is these experiences that have made me think of how I can advocate but still be respectful.  Many time we as caregivers and patients can be impatient or less than respectful with health care staff.  Advocacy is about walking a very fine line between being engaged and proactive or being obnoxious and rude.  At times we all need to take a deep breathe and ask ourselves "Am i being part of the solution - or part of the problem"?

Being a strong and effective advocate does not mean we have a license to behave in any way we like.  We are imperfect humans dealing with a health care system that is also less than perfect.  Differences of opinion are inevitable.  Should we accept everything our health care providers tell us?  No...but that does not mean we need to revert to infantile behavior and risk alienating our care team.

As I stated in the beginning of this blog, I am a strong proponent of peer support.  Families, caregivers, and patients supporting each other.  When you meet others who are going through similar experiences there is an instant connection and understanding that Doctors and Nurses just can't provide. We all get frustrated and that is why it is important to talk to others and share our experiences. We can discuss what works and what doesn't.  It is a critical support network.  I think being able to confide in another person who "really" understands what you are going through is an effective way to vent some frustration that may prompt some less than desirable behaviour.  Peers can also suggest proactive strategies for effective (not destructive) advocacy.  Peers can also tell you...perhaps you were a little out of line. 

The bottom line is that although I have seen medical professionals behave in a less than respectful manner, the same can also be said of some patients and families.  Respect is a two way street and in no circumstances is abuse of other people ever acceptable regardless of your circumstances.

There is Hope for Health Care

It has been just over a week since we have returned from Edmonton.  We are firmly on the very slow road to recovery.  A separated sternum does not heal really quickly and it is a slow and very painful recovery.  I wish I could report amazing progress and that Susan is up and moving around like normal but that just wouldn't be true.  Just about any sudden movement is followed by a deep gasp, squinted eyes, and a few choice words.  This morning at breakfast I heard a snap, crackle, and pop which did not come from the Rice Krispies.  Yes...the sternum and all their attaching components are starting to heal but it is very slow going.  This means that life for Susan right now is a very slow pace.  I'm helping around the house and doing the "heavy lifting."  This leaves lots of time to reflect on the events of the last few weeks.

Many times i'm critical of what goes on in health care.  To be honest, from the time we got on the airplane on August 1st...to the time we returned home last Tuesday I am hard pressed to come up with anything to be overly critical about.  We had plenty of positive experiences.  What is more impressive is that this is in sharp contrast to the experience we had 7 years ago undergoing the same procedure.  Can Health Systems actually change and improve?  Can the changes become so noticeable that the patient and caregiver can't help but notice the changes.  The short answer is ..."Yes"  So what happened?

The most obvious change over our experience 7 years ago was the physical building.  The Mazankowski building in 2009 was nearing completion, but not yet in use.  We were in less than ideal circumstances, the CVICU was a windowless chamber that was crowded and dismal.  Even staff described it as "that awful place."  The wards were also less than inspiring.  Things were shoved everywhere due to an obvious lack of space.  It is remarkable how just a physical space can make the experience so much better and less dreary.  Fast forward to our experience of early August and we were treated to a spacious CVICU suite with plenty of natural light.  I would also dare say the privacy of these rooms made the ICU almost a serene place.  That took me by surprise.  The rooms on the ward were also spacious...with 2 patients per room we still had plenty of space for visitors.  One of the ladies in the next bed to us had 5 visitors one day and we barely noticed.  There was plenty of space for them.  Everything on the ward was easy to find and relatively intuitive.  I could easily find supplies like blankets, towels, or water.  A very welcoming environment.

The physical space of the hospital was an obvious improvement but after all it is the people who really make things happen.  Staff did a great job at introducing themselves and they were engaged with us enough that we actually got to know their names.  I still recall all of the names of all of the Doctors and nurses we interacted with...and I never wrote the names down.  We had three nurses in CVICU;  all were excellent.  On the ward we had consistency in nursing.  We saw the same nurses on consecutive shifts.   Over a period of  5 days, on the ward, we effectively only had 4 nurses.  That kind of consistency means no repeated introductions.  Not having to repeat yourself is a huge plus and gave us more confidence that the nursing staff had a good handle on what was going on.

Many times you feel like you are abandoned in the hospital.  Someone says they will get something for you and you don't see them for an hour (or more).  This was not the case...we always felt that someone was checking on things and were very accessible.  The consistency and accessibility of the nursing staff was a huge difference in our experience this time as opposed to 7 years ago.  Big change!

One thing that I noticed was the age of the nursing staff, on the ward, as well as the age of some of the patients.   I don't think it is a surprise as education in nursing schools is emphasizing patient and family centred care.  The result is that new nurses are much more in tune with patients needs.  Our ward nurses were likely all under the age of 35.  As an example, one of our nurses graduated from nursing school only a year ago.  However, she had previously been in EMS for 7 years previous.  So, not a rookie by any means.  We also noticed a few of the patients were also under 40.  This is different.  The cardiac crowd tends to be of the 60+ demographic.  Seeing younger patients means patients who have grown up in a different environment and who view health care very differently.  Changes in the demographic of the staff and patients makes change much more likely.  Important to note that a younger demographic does not necessarily mean positive change....change still needs to be managed and directed in a positive direction.  You can't underestimate the value of leadership.  It is also important to recognize the veteran nurses who provide excellent mentors for younger nurses rising through the ranks.  I definitely saw a huge improvement in the quality of nursing.

The one gap that I repeatedly come up against is the issue of discharge.  Having talked to many people who have extensive patient experiences, many feel like being discharged is like falling off a cliff as far as your care and supports are concerned.  The one change, this time around, was that the hospital in Alberta ensured that a home care nurse was coordinated for us here in Manitoba.  As circumstances would have it, we were contacted, by our home care nurse from Selkirk.   The call occurred as we were driving home from the airport.  We hadn't been on the ground in Winnipeg for an hour and we were already getting follow-up.  Our nurse visited us at home and did a brief check up for three consecutive days following our arrival home.  This was a nice support and a good trend to see in post surgical follow up.  We were also asked to make an appointment with our family doctor,  which is another good idea.  It's really important to do this kind of coordinating with everyone involved in your care.

The one reality that cannot be avoided is that going home is a big adjustment.  You go from having all of the staff, equipment, and services (that a hospital offers) to little or no supports in the community.  Caregivers face the brunt of this burden.  It is for this reason that I took time off from work to fill this role.  Although I was busy when I was in Edmonton.  Now that I am home...this is when the work begins for me.  Fortunately, we had booked some help.  My sister hung around for a few days...and my mother in law who helped us a ton 7 years ago is stopping by to help too.

From reading this you would get the impression that we had a very favourable experience in Edmonton and that would be true.  We felt very well cared for.  Was our experience perfect...No...but the amount of changes we have seen have been noticeable and the hospital should be commended for their efforts.  When I raise issues or have complaints about our experience in health care, I have to ensure that the experiences that I am sharing can result in something positive and are not being critical just for the sake of being critical.  When things work well, it is important to identify the positives as and our experience was certainly positive.

Thanks everyone at the "Maz" for our experience.

Day 9 - Home!

We arrive home shortly after 4:00 on Tuesday afternoon.  It is amazing how only a few days away from home feels like an eternity.

We had a noon flight out of Edmonton so we got up and didn't have to rush around.  Everything went very smoothly.  However, every bump in the road or any turbulence in the air pretty much sent Susan through the roof.  She will be very tender and sore for the next few weeks.

Approaching Winnipeg:
The Assiniboine River and Trans Canada Highway

 It was quote humorous on the drive home I received a call from home care.  We had been on the ground in Manitoba an hour and we were already getting follow up.  The rehab process starts up right away.

This closes another chapter, but we know the story is far from over.  The last few months have been very challenging and have been made bearable from many people who have helped us along the way.  A big thanks from all of us.

The Joy of Sleeping in your own bed.
Many have commented on the "Heart" Pillows.Here are Susan's two pillows.
 The on one the left is a little faded and a little beat up after 7 years of use.
The one on the right is the pillow she received this week.

As I have chronicled the events of the last few days I have omitted a lot of details.  The point of this blog was to try to keep friends and family informed about what was happening as we went on this trip.  This has not been a commentary on the state of health care.  Believe me, the amount of things I have witnessed over the past week can provide enough material for a year's worth of blog posts.  The one thing I will comment on is that our experience at the Mazankowski Heart Institute this week has been a very positive one.  I cannot believe how much better our experience was this time around as compared to 7 years ago.  This hospital has made huge changes as they have embraced patient and family centred care.  The new facilities do not hurt either.  It is really encouraging to see a health care organization attempting to get it right.  

A huge thanks to all of the people who supported us through this time...both medically and personally.

Day 8 - The Great Escape

My apologies for this being a little late...but as Susan starts to feel better I get a little busier.  Doesn't leave a lot of time for blog posts and social media.

When I went to the hospital Monday morning, I was greeted by Susan who was starting to get herself together in preparation for leaving the hospital.  The Docs had been by and had reviewed her telemetry from the last 24 hours which seemed to be fine.  Her little blip of V-Tac was probably just normal post op recovery stuff.

Susan's Telemtry came off on Monday morning
When this comes off you are heading home!

With things moving in the right direction and it being Monday...a lot of people were in their offices today.  It gave me a chance to talk to some folks I have worked with as part of the Stollery Family Centred Care Council and I also ran into some other familiar faces from our past.  It was a lot of fun.  A couple of our "associates" from the past stopped by to visit Susan as well.  I am really glad we got to see some of these people. before we left.  Some have played a big part in out lives and it was nice to show them some pictures of our kids and let them know how well Russell is doing.  One of the cool things that I got to see was some of the renderings of what the new Pediatric ICUs are going to look like.  This will be a huge change from where they are currently situated.

Artist Rendering of the new Pediatric ICU at the
Stollery Children's Hospital

It was a lot fun socializing as it does feel like a lot of the pressure is now off, but it is safe to say that Susan and I were anxious to get out of the hospital and getting back home.

I really appreciated Susan's attitude as I brought her all her civilian clothes and she began getting herself ready to leave.  She had a shower, did her make up, and hair.  It was just like being at home...me anxious to go somewhere and her taking her sweet time getting ready...lol.  She was determined to leave the hospital on "her" terms.  I admire that fighting spirit.

In spite of her spirit there is a reality to be faced.  She is only a few days post op and her recovery is a long one.  She has to be extremely careful how she moves and any bump or movement can send her through the roof.  She is extremely tender.  Managing her pain is a challenge as well...she is great on Tylenol and Ibuprofen during the day but sleeping is really painful and she needs a little more pain med for that.  The heavier duty meds make her feel awful.  The whole pain management thing is a balancing act.

We escaped from the hospital just a bit after noon.  We are staying at my Aunt's house which is about 10 mins from the hospital.  It was a nice hurdle to get past; to be out of the hospital.

We were very anxious to get home to see the kids and there was flight that would leave Edmonton a little after 6PM.  Susan felt she couldn't handle everything all in one day...so we decided to stay the night and leave Edmonton on a Noon flight on Tuesday.

Day 7 - The Bump in the Road

With high hopes that we might get discharged from the hospital today; that theory was quickly extinguished early this morning.  Susan had a short bout of arrhythmia this morning and it's looking like they want to hang onto her for another 24 hrs.  I guess things were going a little too smoothly.

Things like this are not a huge surprise given the massive amount of manipulation the heart has endured in the last few days.  Is this disconcerting?  Most definitely.  This also the reason why Susan has an AICD (Automatic Implantible Cardioverter Defibrillator).  The "blip" that Susan's heart made (also known as V-Tac) was not significant enough to cause the AICD to go off.

There are Susan's Purple Irises
No significance to this picture other than these flowers always
put a smile on Susan's face.  :) 

It's a bit of a disappointment but we should be very familiar with the unexpected nature of what we are doing here.  We've encountered these kinds of snafus on many occasions.  I think it was hard on Susan as I think she was really looking forward to getting out of here and being one step closer to being home and seeing Nicole and Russell.  That really highlights the mental side of what we are going through.  Yes, this is a significant medical experience but it is very challenging from the psychological point of view as well.  Couple that with some medications that made Susan feel fairly crummy this morning it wasn't a great start to the day.

The afternoon has gone a bit better.  Susan perked up a bit after lunch and went for a walk.  While hanging out in the healing gardens we met a couple from Saskatoon.  After the obligatory "what are you in for?" icebreaker we found that they were recent recipients of a new heart.  We felt right at home.  Of course we exchanged war stories and some of our medical adventures.  We visited for a long time.  Hospital Administrators and Health Care professionals take note.  Peer support is REALLY REALLY important.  The connections are immediate and no one can speak to each other better than those who have similar experiences.  It is a huge morale boost.  We really need to integrate patients more and create opportunities where patients and the family's can interact and support each other.

So what is the plan?  The current plan is for Susan to "chill" for the rest of the day.  No homework.  The Docs have ordered an echo in the morning (Monday) and the "plan" is for discharge tomorrow.  That is the "plan" subject to change without notice.

Day 6 - We Have Work To Do

Saturday started with some encouraging circumstances.  When I arrived at the hospital shortly after 8:00, I was greeted by Susan sitting in her chair having her breakfast.  This was the first time she has "really" eaten.  I've been trying to bribe her with some treats, up until now, but she would only nibble on things.  Seeing her polish off her tray was a welcome sight and an obvious sign that she was feeling better.

Susan's Homework:  Her Spiro-meter to practice breathing and
to help her lungs get rid of her congestion.

With Susan feeling a bit better, we quickly were assigned the day's homework.  As has been the them of this trip to the hospital they haven't really given us a break.  Susan was given a whole list of tasks today.  4 - walks, 10 sets of breathing exercises on the spirometer, getting rid of all of the fluid they inundate you with during the surgery.  While doing this she has to keep on top of her pain medications.  The key with managing pain is to stay on top of it.  You can't be a hero and try to go without and attempt to be tough.  If you let the pain break through you will be on a roller coaster of ups and downs with your pain and the meds etc.  Today Susan is trying to go without the opioids, which make her feel awful.  Today we are trying things with just extra strength Tylenol.

Susan's Whiteboard: Complete with her homework assignment
for the day.  

This is all normal surgical follow up and part of getting yourself back up and moving again.  Susan chastised me a little this morning.  Now that she is a little more coherent she has been reading my blog.  Yes, she does have editorial privileges.  The one thing that is difficult in writing about this experience is trying to accurately capture the mood of what is going on.  The difficulty is that the patient perspective (Susan) is quite a bit different than the caregiver perspective (Me).  From my point of view, the results of the surgery were fantastic, in fact I was almost giddy on Wednesday afternoon after I talked to Dr Ross and he shared the results with me.  Susan however, is the person who feels like she was run over by a bus.  Open heart surgery is no minor thing.  Although, I know she is aware of the results her priorities are a little different right now. She just wants to feel like a normal human being again.  In her words, she just wants to fast forward to two weeks into the future and skip all of the aches and pains of early recovery.  On Friday, we had a real hard time managing her pain.  They would give her an opioid which would make her feel nauseated.  To help the nausea they give her an anti-nausea med which makes her feel dizzy.  This is not a great scenario for trying to get someone eating and walking.

This is why today was such an encouraging day.  The pain was managed with Tylenol which gave Susan a chance to feel a little more normal today.  She actually had some energy and "wanted" to go for a walk.

With all of the right things happening, we began to talk more seriously about the "D" word...."Discharge."  This has come up in several discussions over the past few days but only in hypothetical terms.  Now this was real.  Our intent was to fly Nicole and Russell to Edmonton for a couple of days.  With Susan progressing so quickly we have cancelled our plans.  That is a disappointment but a small price to pay for getting home early.

There is talk about discharge on Sunday...with a flight home on Monday.  This is early in the discussion stage and can change but this is pretty exciting stuff.  There is light at the end of the tunnel.  Too good to be true?

Day 5 - Get Up and Get Moving

Normally when we get moved up to the ward, we expect things to slow down a bit as things are not as intense as in ICU.  The nurses are usually covering a lot of patients and they take a while to get to us.  This has certainly not been the case.  Today I could only describe as busy.  The myriad of lines and tubes that Susan had attached to her started coming off fast ans furious this morning.  By lunch time she only had one peripheral IV.  Even that IV is not hooked up to anything...it is there only as a precautionary measure.  So Susan has basically gone wireless.

With recovery from surgery you have to slowly startup all of the bodies systems.  It seems like we have been almost constantly on the move.  If we haven't been going for a walk...it has been doing breathing exercises or trips to the washroom.  Lots of moving today.

At rounds this morning the surgeons seemed quite pleased with themselves, which I will take as a good sign.  After all a patients job is to make the Docs look good (lol).  The comment we heard today from them is that we are ready to be discharged as soon as Susan is mobile enough to leave the hospital.  As far as they are concerned they are done.

We are starting to talk about discharge now.  It still seems a long way off but everything has been moving at a break neck speed we can certainly see light at the end of the tunnel.

Susan and I had a chance to go for a walk after supper and sit in the Healing Garden for a while.  Susan really appreciated seeing some sunshine.  One of the difficulties of today was that it was Russell's birthday today.  We got lots of pictures from home and his birthday cake etc.  Sounds like Russell had a great day.  Perhaps we'll bring Mom home for a belated birthday present.

The goal for tonite is for Susan to get a good night's rest.  She had quite a challenge last night getting comfortable.  Hopefully, things aren't quite so challenging tonite.

Wonder what new adventures we encounter tomorrow.

Day 4 - Moving Day

We've been in CVICU 24 hrs now.  Looks like they are ready to kick us out of here.  They are making plans to move us up to the ward fairly soon.  That may happen this afternoon.  Just all part of the normal routine.  Thy like to keep things moving along around here.

I assume once we get settled up on the ward and things are a little more stable we may start talking about our timeline for coming home.  For now we are just taking it easy, managing pain, and concentrating on getting up and moving again.  Susan's surgery is not minor and the recovery is no small task.

Now that the spectacular stuff is starting to settle down I can share some of the other things that have been going on around here.

Big kudos to the nursing staff here at the "Maz".  After having done this for 8 years; I tend to hold the bar fairly high.  The folks here have been really good.  I would say a night and day difference between now and our experience here 7 years ago.  We'll see if that continues up on the ward.

It is quite interesting being back here after all these years.  Things that would have completely ticked me off back in the day...i just kind of smile and laugh about now.  Susan has also told me to dial it down a notch...and after all... i'm here for her and not me.  Since being involved with so many aspects of health care, I've been able to peak into the other side of how health care runs and it gives me a much better perspective.  As an example, the procedure for gaining access to the unit is "goofy" to say the least but in the grand scheme of things not a big deal.  Watching the staff try to understand Susan's condition is kind of interesting as well.  Why is it that people who don't have a clue what they are talking about won't ask me anything.  Our bedside nurse yesterday asked me a myriad of questions because as she stated "they don't see a lot of cases" like Susan.  We had a great conversation.  I think we both learned a lot.  That kind of interaction makes me a much better advocate.

I've also had some time to hang out with some of our Stollery folks as well.  While Susan was resting yesterday I went to PICU coffee hour.  Something Susan and I did often when we were here with Russell.  I got to meet some parents of kids who are in NICU and PICU.  I saw that familiar "deer in the headlights...lack of sleep" look that I am sure we had way back when.  What amazed me about these parents was their age.  They seemed so young to me.  I felt a great deal of empathy as many of them are embarking on some very challenging times.  Not sure how these young Moms and Dads will do it...but we did.  I'm sure they will too.  You just have to figure it out.  The one thing i try to make perfectly clear to families when i talk to them is that each one of our journey's is very unique.  You have to forge your own path and be prepared for just about anything.  It's not easy.

Other than the usual hospital things going on...things are going very well.  Lots of time in ICU to do a little reading and some writing.  A nice benefit of the spacious rooms.  Things are gradually getting busier as the nursing support subsides.  This means I will be doing more to support Susan and that the preparation for discharge is well underway.

Susan was supposed to sit up and have some lunch but she's been having some pain issues.  They doped her up again; so she is having a little snooze.  Lunch will wait.

Day 3 - The Surgery

To say what today was like would be quite simply..."awesome"

In the last post about Pre Admit clinic I explained two issues that needed to be addressed in today's surgery and that at the end of this whole procedure that the goal was to reduce the LVOT (Left Ventricular Outflow Tract) pressure.

The myectomy procedure was supposed to remove obstructive tissue in the left ventricle be reducing the septal wall thickness.  This is simply slicing off muscle to open up the chamber.  The second issue was the mitral valve.  Could it be repaired?  If it couldn't the valve would have to be replaced.

The test to see if all of this manipulation would be beneficial would be measuring the pressure in the heart once the surgery was concluded.

My conversation with Dr Ross following the surgery was interesting.  He explained that he did remove some septal wall but probably not a whole lot of material.  The interesting part of the surgery was the mitral valve.  Susan has some unique physiology.  Part of what allows the valve to operate is chordae which atttach to the leading edge of the mitral valve leaflet; that allow the valve to operate.  Susan's are fine.  The concern was that Susan has two additional chordae that are attached to the valve and are of such a size that they are interfering with the operation of the valve and also obstructing flow to the aortic valve which is in close proximity.  It is the equivalent of having a clogged drain.  Dr Ross simply removed these chordae which are not supposed to be there anyway.

So what did all of this do?  Susan went into this surgery which when her heart was put under load was reaching pressure gradient of about 100 mm/hg.  In a normal heart the pressure should be near 0.  Surgery to fix this pressure gradient is recommended above 30 mm/hg.

In Susan's surgery 7 years ago, they measured her LVOT pressure gradient (after surgery) in the vicinity of 15 mm/hg and they would have been happy with that result this time.  The readings that they got today were better than expected.  The pressure post op is near 0.  That is great...great news.

Our reason for not being all that excited about this surgery was based on the fact that doing a myectomy re-do is highly unusual.  We did this 7 years ago and now we have to do it again.  The prospect of doing this again in a few years in not appealing.  The good news coming out of this surgery is that the issue with the mitral valve will not return.  The symptoms that she was experiencing was not due to any of the septal wall growing back.  This means we now have a physiological reason for why we think we may have a longer lasting solution this time around.

Everything I have described is good news.  I am very happy...Susan is still too stoned to care at this point.  We do have a reality that Susan still has a congenital heart condition that still needs to be managed but this should provide some significant improvement to her quality of life.  We just have to wait and see how she feels once she recovers.

So now...we are concentrating on recovery and getting her home.

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.

Day 1 - Arrival in Edmonton - Familiar Sights

Our new journey has begun, although under some auspicious circumstances.  Just before noon today, as we were preparing to go to the airport, the sky got very dark.  The thunder and lighting started; followed by the clouds opening up with a tumultuous downpour.  I was hoping that this was not going to be indicative of the journey on which we were about to embark.

Everything this afternoon went off without incident.  The flight was smooth, for the most part, and once we arrived in Edmonton we began making our way toward our hotel.  I've been to Edmonton in the past few years for work but this is the first time Susan has been back since her surgery and our 6 month stay with Russell.  It was an interesting drive in from the airport as we re-familiarized ourselves with the surroundings.  As we got closer to the UofA we recalled many memories.  Lots has changed but many things are similar and quite familiar.  We checked in at the Campus Towers Hotel, another location we knew all to well.  The person at the front desk politely asked "if we had stayed with them before", we quietly chuckled and politely stated "yes."  We didn't mention that we had made this hotel our home for 6 months.  We went up to our room and found ourselves looking out at a very familiar view of downtown Edmonton.

Edmonton Skyline as viewed from our hotel room.

I think this is when it really sunk in that this was really happening.  We are doing this again.  Our family's 4th open heart surgery.  Our 3rd medical trip to Edmonton.  It is so familiar but in many ways very different.  We didn't leave an infant and a toddler at home.  We left two very independent children, who will remember this experience in the years to come.  Just like our kids have changed over the past years, our circumstances and planning for this trip was very different than in years past.

One of the nice things about coming to Edmonton is the chance to visit some family and friends while we are here.  We didn't spend 5 mins in our hotel room until we were off to my Aunt's home in West Edmonton for dinner with her and my cousins.  A very welcome distraction.  I wish we could visit like this under better circumstances but it it still nice to re-connect with family.  It is so nice to be welcomed like this.  As we prepared to leave after dinner my cousin Deb offered to pray with us.  Another reminder that we are not in this situation alone.  We have many people supporting us and a God who has seen us through some tumultuous times and shown us a plan every step of the way.

We are now back at our hotel, getting organized for tomorrow.  Tomorrow we have to be at the hospital at 7:45 AM for Pre-Admit Clinic (PAC).  We have been told to expect to be at the hospital for 4-6 hours.  We have been to a lot of PACs before but we have never spent that amount of time on a Pre-Admit.  Probably because we are from out of province they are jamming a bunch of prep into one day.  I guess we will find out tomorrow.  I expect the PAC will be fairly dull with lots of waiting.  I hope we can find out more about the logistics of the surgery and ask a few questions about the game plan.  If all goes according to plan surgery will happen on Wednesday.  I still expect some curve-balls as these things never go completely according to plan.  My worry is that we get bumped.  Alberta has huge capacity issues just like Manitoba.  If an acute case comes up and resources are not available it is very conceivable that we could be bumped.  That would not be a great scenario but it's reality.

That's all for now from the #cardiactourist