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

One Week to Go

In one week, on August 1st, we will be flying to Edmonton for Susan's second open heart surgery in 7 years.  The original referral to Edmonton from St Boniface Hospital in Winnipeg was sent in early February.  We've been waiting a long time for this.  Waiting is not easy.

We received the news in early June that a date had been set for August 3rd, for the surgery.  It was nice to finally have a date but it also meant we had essentially two months to "kill" in anticipation of this date.  This has been a process of metaphorically watching the "kettle boil."  Our first reaction to the date in August was profound disappointment.  We were hoping to be done this "whole mess" by now.  When we were discussing plans in March and April we hoped we could have had this all done by the end of June but that wasn't to be.  I think our disappointment was based on the reality that we would likely lose a whole summer to a very persistent cardiac illness.  Susan would likely be house bound up until the surgery date and she would likely spend the balance of the summer recovering from surgery.  It would have been very easy to let this whole summer slip away.

Our "Holiday" Selfie.
On our way to the cabin at Riding Mountain National Park

Fortunately, we have been blessed by many outstanding people who have helped us make this summer a unique (if not enjoyable) experience.  We've been busy.  After school ended at the end of June we have tried to keep the kids busy doing as many activities as we could manage.  We were even able to spend a week at Clear Lake in Riding Mountain National Park last week.  This has become an annual event for our family.  I think I can speak for everyone that we all had a great time.  Russell was even able to pry himself away from "Minecraft" for a few days to enjoy some time at the lake.

Near Miss!
The damage done by a storm on July 20th

So here we are one week away from surgery.  Now our planning for Edmonton becomes a reality.  Unfortunately, we have some unexpected clean up to do before we go.  We had a storm hit our area while we were gone at the lake.  Everything is OK but we do have some damage to our trees and our back shed looks like it's roof may need some attention too.  It could have been a lot worse.

Our basic plan for our stay in Edmonton is in place.  Our flights are booked and accommodations are made.  I'm off work now until September, so things are falling into place.  The one big question mark in this whole process are the things we don't control.  The result of the surgery.  As much as we would like to think we are knowledgeable of this process; we are still very uncertain of the results.  Will this be a solution?  Probably not.

We hope this surgery goes as planned.  10-14 days in Edmonton and then a journey home to recover.  However, there is the possibility that things will not go as planned.  This is not a minor surgery and there are significant risks.  The extent of the surgery has not yet been planned.  There will be some decisions to be made in the operating room.  I'll explain some of the technical details in a future post but my understanding is that we are going to know a lot more on the afternoon of August 3rd, after the surgery is complete.

For now....the countdown is on.  7 days to go!

There are no “Hollywood” endings

A few months ago, I attended (via teleconference) our monthly Family Centred Care Council Meeting at the Stollery.  As is the practise at our meetings we start with a patient story.  We do this for two reasons.  It is a great way to get to know our fellow council members and it is also a very friendly environment for us to practise sharing our stories.  Many of us who have been through some spectacular health care journeys are routinely asked to share our stories in a variety of venues.  Presenting at our council meetings is a great way to practice our delivery for those who are not comfortable with public speaking.

These stories also spark some very interesting and pertinent discussions.  At this particular meeting a Mom shared the story of her son who passed away as an infant.  She chronicled her journey and shared many of her experiences.  These stories are spellbinding.  Something interesting that she shared was that after her son passed away she was referred to a psychologist who worked with her family for nearly a year after the passing of their son.  She shared how this support was essential for her and her family to go through the grieving process. 

As I heard this story and the adjustments this family had to go through I was reminded of our struggles post-hospital.  I often talk about the "continuum of care" that should exist after you leave the hospital.  We left the hospital eternally grateful that Russell’s life had been saved.  When in hospital we were told so many positive things about life post-transplant. Everything would be so wonderful.  Life could go back to normal. 

Nothing could have been further from the truth.

Russell has some unique life experiences

I understand why people were telling us all these positive things about Russell’s new life, with a new heart.  They were trying to keep us upbeat and positive.  Fortunately, some programs were inplacefor us once we finally received the transplant and were sent home.  When we returned home from Edmonton we were immediately referred to Child Development.  We thought this was routine follow-up but it soon became very apparent that we would be requiring additional supports for many issues that we would encounter.  Keep in mind that transplant is the last option for anyone with a heart issue.  Transplant kids receive many invasive; but life-saving therapies.  What we learned when we talked to other families, they were dealing with many of the same issues that we were.  Eating issues, kidney dysfunction, developmental delays…the list went on and on.  Why didn’t someone mention this or were we too distracted by what was going on around us to listen?  Regardless, we were listening now.

I think our real eye-opener occurred when Russell started school.  We have some wonderful people that we deal with at our school and they try really hard.  We have no complaints.  However, it is quite stunning when they openly admit they are not prepared for dealing with kids like Russell.  That is quite a startling admission.  Medically complex kids like Russell are not the norm for the public school system.  Schools have adapted their programs to deal with issues like Autism, ADHD, ADD etc.  No one can tell us specifically why Russell’s developmental issues even exist.  They could be medically related, it could be related to trauma that he has endured, or it could be something unrelated to any of his medical complexities.  It could be his natural state.  No one knows.  We often get comments like “he demonstrates some characteristics of autism….BUT he’s not autistic.”  They equate behaviour he demonstrates to something they are familiar with. 

As parents, this is particularly heart breaking.  We see a little boy who has cheated death on several occasions continue to struggle years later.  We pray that he could just get past all of the difficulties.  If anyone deserves a break; it’s him.  He is very aware that he can’t do some of the things his classmates are doing.  He is his own worst critic.  It is also very frustrating to have meetings, like we do, to discuss Russell’s academic plan.  A meeting with no less than 8 people who are specialists in a variety of educational fields.  All of which are learning with us.  They are great at evaluating Russell and where he stands on a developmental level but a clear plan to close the gap is not readily apparent.  It will be a lot of hard work…for all of us.  What will the end result be?  We have no idea.

The reality of his complex life has become more apparent over the last few weeks as he has started to be more forthcoming about his feelings.  To this point, he has never acknowledged his special circumstances or the fact that he has a transplant.  One of Russell’s challenges is communication.  Over the past couple of weeks he has begun expressing how he feels about his circumstances.  One evening, after a day that included his obligatory blood work I had a chance to discuss this process that he has gone through literally hundreds of times.  I could tell he was a bit upset about it.  I asked him how he felt about going for blood work.  He looked down and very quietly he told me “it sucked.”  I agreed.  It was a tough moment as this was the first time he ever expressed his thoughts on this.  He has never spoken about it before.  This was a bittersweet moment as I was glad he expressed his feelings but it also confirmed our feelings about how difficult these procedures are for him. 

I know many of our friends and family have hoped and prayed for that our life would return to some semblance of “normal” (whatever that means).  As we prepare for our third trip out of province for surgery (for Susan), it seems very apparent that this will likely never happen.

Difficult times have a way of continuing for months and years.  If we aren’t dealing with these issues, we are dealing with the effects of them for a long time after it appears these chapters in our lives are over.  After we were released from hospital with Russell we had a year of “firsts”.  His first birthday, the anniversary of his “crash” in the Winnipeg Children’s ER, the Berlin Heart, and the transplant itself.  Each anniversary had a profound effect on us.  To this day…we have many vivid reminders that will transport us back in time to some of our darkest days in the Stollery ICU.  It will always be this way for us but it is also a reminder of how far we have come.

For someone who is reading this I have just one suggestion.  If you know of someone who is going through a difficult time (whatever that difficulty is).  Remember that there are no “Hollywood” endings.  Momentous life changing events are exactly that; “life changing.”  There is no going back.  If you want to support a friend or family member you have to remember that the effects are ongoing.  It’s a good idea to check in on these people 6 months or a year down the road.  The process of adjustment is a long one, and we need to keep these people in our thoughts and prayers and reach out to them even when things appear to have returned to normal.  Many emotions can be just beneath the surface.

3 Weeks to Go

Things have been fairly quiet at our house.  Our flights are now booked for Susan's trip to Edmonton.  We will be leaving on August 1st.  It is nice to finally be able to get these arrangements made and finalized.  There are a lot of logistics to organize for a trip like this and things are falling into place now.

As we are approaching Susan's surgery date we are slowly checking things off of the "To Do" list.  Flights are booked, accommodations are arranged, and we are getting some of our life's events out of the way.  Each small item that we can complete is one less thing to stress over.  School is now done, which is a huge relief.  We had an "early" birthday party for Russell on Saturday.  We will be in Edmonton for Russell's birth date so we had his party early so he could have a special day when we are all together.  I find it completely amusing how much work this has been to organize all of this over the past few weeks.  When Russell was airlifted to Edmonton in 2008, I had about 6 hours to do all of this, and I did it by myself as Susan was at the hospital.  Still have no idea how that all happened.  I'm pretty sure there were numerous things that didn't get done.

Susan is doing "OK."  At this point in time if we were to have any date change it would be a huge challenge to undo our plans so we hope that we are able to just quietly wait for August to roll around.  The strategy right now is to be as stress-free as possible.  We are still trying to do some normal family things but it is all built around a very "relaxed" schedule.  Managing stress is a huge issue for Susan now.  As is usually the case with any illness you have good days and bad.  We just learn and adapt.  I wish I could describe how she is feeling but i really can't.  She is having more frequent bouts of chest pain and she tires really quickly.  She can still do things but she has to be really careful to take things at a really slow pace.  Anything that requires any exertion has to be planned with a fairly lengthy recovery period.  Load the dishwasher...then sit for an hour to recover.  Lots of fluid to keep well hydrated and keep blood pressure up.  Salty snacks are also a good thing to keep the blood pressure up.

I will be taking time off of work to help out at home.  My last day at work will be this Friday.  Then I can concentrate on getting things ready for our trip.  We are trying very hard to do some normal summer time activities.  In essence, when we learned of our date in August we knew we had lost our entire summer but we are trying to do at least a few things to keep spirits up and moving forward.  One of the most difficult things about waiting is the psychological effect it has.  It really helps to keep the mind busy.

We have a lot to be thankful for.  We have received a lot of support from family and friends.  Our freezer has a lot of goodies in it and we have also had some help with some things around the house.  Every little bit helps.

We hope the next few weeks goes by quickly and without any significant events.  Our hope is that things stays very quiet.  Hoping I have nothing of any significance to report.