Monday, July 25, 2016

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!

Saturday, July 16, 2016

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.

Monday, July 11, 2016

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.