Merry Christmas - 2014

The fun thing about blog posts is that you can be completely self-indulgent.  Where else can you so blatantly be "all about me."

As we approach another Christmas I saw a picture from the Stollery Children's Hospital showing all of the preparations for Christmas morning.  The "Beach" is the play area on the 4th floor which was jammed with presents and all of the other items that will be distributed to the kids in the hospital on Christmas morning.  It really is Santa's workshop.  The amount of effort put into this is truly amazing and it does really make Christmas special for families who are unfortunate enough to have to spend Christmas in the hospital.

This image reminded me of our Christmas at the Stollery.  Our Christmas wish was very different that year.  We were waiting for a heart transplant and it would have been amazing to have received our donor heart on Christmas, but it was not meant to be.  In fact Christmas Eve we learned that we had been offered a heart the night before but it was too large for Russell by the smallest of margins and it went to another child instead.  A child who happened to be at the next bed.  Our frustration on that do was very evident.  We were especially thankful to a special elf who spent time with is on that Christmas Eve. That special elf was Russell's Berlin Heart brother who was also waiting for a heart.  It was hard to be frustrated or angry when talking to someone who had the exact same issue.

To all of Santa's Helpers at the Stollery who are working feverishly this Christmas...I wrote this note below.  I hope you enjoy!

'Twas the Night Before Christmas

'Twas the night before Christmas, 6 short years ago,

Where we found ourselves, far from our home. 

I remember the cold that memorable night.

As our tiny boy, was far from alright. 

In the Stollery's care our boy stayed in good stead

His heart beat held steady with a device by his bed.

Our future uncertain, our outcome unknown

A new heart for Christmas; our impatience had grown.

Our journey had started three months before.

His heart fell ill and could not take anymore.                           

My 8 week old boy's heart was nearing the end.

His heart was sick and could not be mend.

ICU and hospital our new home became

A heart for a transplant became our new aim.

The days turned to weeks and our fate seemed so grim.

The watching and waiting were doing us in.

One offer, then another; not quite a right fit

Could Christmas bring that one special gift?

Christmas day came and went, our gift did not come

Another day had come and gone; unanswered prayers to some.

 

One day passed and then another, an end not in sight

We doubted and fretted; would our boy win this fight?

But unknown to us the stage had been set.

In a city far away in the Pacific Northwest.

Another young boy was clinging to life.

A story filled with sorrow and unfortunate strife.

The stage was now set; a decision was made.

A call of compassion and plans were well laid

Early that morning just before the New Year

A heart had been found; joy replaced fear.

The waiting was over; a new chapter began

Our gift of new life was all part of the plan.

As I think of this time and memories so fond.

We stop and remember my son's kindred bond.

A selfless choice, by a father and mother.

A new beginning for us; an end for another.

At this time of year I remember our plight

And our special gift that ended our fight.

Our Christmas wish to one and all.

Is of joy, and peace and thanks above all.

Merry Christmas from Donald, Susan, Nicole, and Russell

A Day in the Life of a Patient Advocate

For the most part our life is routine.  We go to work, we come home, we get groceries; its all very normal.  However, there are symptoms that things aren't quite so "normal."  Whatever "normal" means.

As we fetch groceries we park in the handicapped spot.  I'm sure we get the evil stares from people who see a family with young kids using a handicapped spot.  After all; things look so perfect.  Looks can be deceiving.

Those that know us; know we have two cardiac patients in our family.  My wife and my son.  My son will be celebrating his 6th anniversary of his heart transplant on Dec 30th.  Thanks to modern medicine we can lead a relatively normal life.  Relatively.

I find myself routinely taking someone to medical appointments or on the phone with the pharmacy.   There always seems to be something going on.  I am a patient advocate, not by choice, but by necessity, but what does being a patient advocate mean?

Patient advocacy is another term that gets bandied about in  medical circles without a lot of real understanding.  We talk about patient engagement, family centred care, in similar terms.  They all sound good and have become the trend in health care policy.  All part of "politically correct" health care.  When people ask me what my thoughts are on these topics I try to give practical examples from my personal experience.

Today was patient advocacy day for me.

It started at about noon today.  I received a phone call from my son's cardiology clinic with my son's blood test results.  He gets blood tests every couple of weeks to monitor the level of anti-rejection
in his system.  We have been having issues the past couple of months maintaining his levels.  This is odd seeing that his levels have been rock solid steady for more than 5 years.  In discussion, with our Doctors and discussing all of the potential issues we suspected that we may have received a bad batch of medication.  It is unlikely; but possible.  We got a new batch and we managed to get things somewhat stable.  Today, we encountered the same strange levels that we encountered almost two months ago.  Could we have received a second bad batch?  That seemed truly unbelievable.  Again, we discussed every possible explanation and came to the same conclusion.  Bad medicine.

For the second time we had to rush to get a new batch of medicine in time for the evening dose (My son takes his med twice a day.)  This time we wanted to get a new compound made at a different pharmacy.  Despite our best efforts we would not get a new batch until the next day.  Our son would miss two doses.  Not great news.

My first question to our cardiologist was a question I have used many times before.  "On a scale of 1 to 10; how worried should I be?"  After that discussion I felt a lot better as I was re-assured that this was a manageable situation and that, although not ideal, it wasn't the cataclysmic apocalypse that i might have feared.  My second question was how could we get medication to my son and not have him miss two doses.  I explained that if my son were sick and I presented at Emergency, the hospital would be obligated to provide his medications if we had forgotten ours at home.  I asked if there was any way we could get the med from the hospital.  I would even agree to admitting him to hospital if it would satisfy hospital policy.  I really like our cardiologist and have a tremendous amount of respect for her.  She realized that missing two doses was not an acceptable scenario to me and she also realized that admitting us to hospital or going to Emergency would be a huge waste of hospital resources.  She left me in the clinic waiting area and called the hospital pharmacy and asked if they could make up enough medicine for a couple of days; to ensure we had enough med until we could get our medication from our community pharmacy.  We had a small batch of medication in about 10 mins.

The story I have shared is an experience we have had many times.  I have had to advocate on behalf of my family on many occasions.  Patients cannot sit back and expect the "system" to meet their needs.  The process has to be interactive.  There is also no way I could advocate for my family without educating myself.   Through every experience I have had in health care I have learned and I try to apply that knowledge when I support my family and how they are cared for.

This was just one day in the life of someone who the health care system has become an integral part.  I live in constant fear of how others are able to navigate health care because I know many people do not have the experience or support to effectively advocate.  Every patient whether they be 8 or 80 need effective advocates to help support them and either help them be their own advocate or advocate for them if they are unable.

Project Management 101 - City of Winnipeg take note.

I'm posting about an issue I have never tackled publicly before. Typically, my posts are related to health care but that is just one part of my life.

Over the past couple of years I have watched the incompetence of our civic leaders in Winnipeg attempt to address the debacle that has become many of the capital projects they have undertaken in recent years.  The Police Headquarters, fire halls, shady land deals....the list goes on and on.  Finally, the results of several audits have been handed over to the RCMP for investigation.  It is clear the story is far from over.  The question for most members of the public is how do things get so bad and go on for so long?  To shed a little light on this I have to explain a little about my experience.

 For the past 20 years or so I have worked in and around Project Management.  I have worked mostly in construction and heavy industry.  5 years ago I joined Canada Post as they embarked on the largest capital modernizations in their history.  A 2 Billion dollar upgrade to their aging mail processing infrastructure.  Yes...that's Billion with a "B".  For the past 4 years I have been working with CPC (Canada Post Corporation NOT Conservative Party of Canada) as the Cost Controller for Postal Transformation for the Western Canada Region.  In other words, every dime of CPC money spent on the project has to go though a rigorous cost control process to validate any expenditure.  If you want to spend project money you have to comply with cost control and I'm the cost controller.

Many times I wondered what value my role really brought but when I read the countless stories reported in the media about civic mismanagement of contracts it validated my position and what I was doing.  In the back of my mind as I would read about all of that was going on at city hall I would think to myself, "that could never happen here."  Because CPC is a crown corporation there is an almost fanatical attention to transparency and accountability.  We need to be beyond squeaky clean.  We have been audited so many times by both internal and external auditors I've completely lost count.  There are literally dozens of people at CPC who are monitoring and controlling our projects to ensure the success of the program and ensure that we are fiscally responsible.  With this much planning and organizing and as our project is now coming to an end...how have we done?  Strangely enough, our budget was $2 Billion dollars.  What will we have spent?  Ironically, $2 billion dollars.  In addition, has our projects been completed on schedule?  Yes they have. In fact our projected financial benefits are being exceeded.   This brings me to the subject of why I'm writing this post.

How can a bloated government bureaucracy deliver a multi-billion dollar project on time and on budget? What is Canada Post doing differently than the City of Winnipeg?  The City of Winnipeg like any government organization has procurement policies, and a robust procurement process.  In my career I have bid on many City of Winnipeg tenders.  The process is there.  Many big government proponents, wanting to "fix" the problem, want to bring in sweeping policy changes or new legislation.  New rules are not what is needed.  Enforcement of the existing rules are what is required.  So, why are the rules not being adhered too.  The bottom line is leadership.  Who is making decisions at senior levels.  Let me explain:

If a member of our project team needs to get some work done and they need it done quickly, we may not have time to go through all of the processes that our procurement policies require.  Does this mean we stop?  Not at all.  We have mechanisms built into our policies to address "emergency" situations.  Depending on the size and complexity of the request; approval to proceed may require authorization from our CFO or in some cases they may go all the way to our CEO.  This is where leadership becomes very important.  I am simplifying here, but the bottom line is that if we want to bypass our own purchasing rules all we need is a signature from a senior executive.  This is where our leaders set the tone.  If this process becomes routine and a standard practice, then it really minimizes the effectiveness of the rules that have been set in place.  From personal experience, if I am sending requests on a regular basis to Deepak Chopra to be authorized I would expect my career opportunities to be significantly curtailed.  That is a good thing.  Our senior leaders have made it abundantly clear that "exceptions" are sometimes necessary but will NOT be the norm.

To speculate on what is happening at City Hall in Winnipeg, it is clear that a culture has developed over time that there is a certain way of doing business.  That culture has lead to complacency and an acceptance of issuing contracts and doing deals that do not comply with their own internal policies.  This is an obvious leadership issue and unfortunately it has gotten so out of control that the RCMP have to step in.

I have a great deal of respect for our project managers and executive for the way they have managed our projects (at CPC).  What we have done has worked and that is proven by tangible results.  We have consistently delivered on time and on budget.  This all sounds great and I know it sounds like i've drank the "Canada Post Kool Aid." but there is also another harsh reality.  To manage a project in this way and to be completely publicly transparent is extremely expensive.  It takes a tremendous amount of effort and additional cost to manage a project in this way.  In the private sector you would never need to operate in this way.  In the private sector projects can be delivered much cheaper because they do not need to be accountable to a taxpayer.  If you ever wonder why people joke about how governments buy $2000 toilets etc it is because to be transparent and accountable takes a huge bureaucracy and that it is a really expensive proposition.  Government run projects are expensive because the public demands it.  That is not a bad thing; it is just reality.  The other grim reality of government programs is that even if the budget is spent wisely and all of the money is accounted for it doesn't mean the project itself will deliver the desired benefits.  In other words, if the project from the first time it was conceived was a dumb idea, the best management in the world will not change the fact that it was originally a really dumb idea.  Think about that for a second.  The two biggest line items of the provincial budget are Health Care and Education.  What are the two departments that Manitobans most complain about and feel they aren't getting the service they expect?  Health Care and Education.  Not surprising.

The real tragedy of what has gone on at City Hall is that there is a large (and expensive) bureaucracy in place.  In spite of having all of the pieces in place they have still failed, in a spectacular way, to ensure taxpayer dollars are managed properly.  It's time for senior leadership to step up.

NOTE:  As an employee of Canada Post, I am complying with Canada Post Social Media Policy.  The opinions expressed here are my own and do not represent the opinion or policy of Canada Post.

What is Family Centred Health Care?

If you were to "Google" Family Centred Care or Patient centred care you would see words like "collaboration", "respect", "communication" etc and these are all appropriate adjectives to describe family centred care but the words are meaningless unless there is a real understanding of how to put them into practice and to effectively engage patients and families. It has become clear to me that a gap exists between families who want to participate in their own health care and a health care system who wants to effectively engage their patients.

I have been fortunate to be able to speak to nursing students and health care professionals on a semi-regular basis. I have learned a tremendous amount. As a patient family many times you feel that people are not listening to you or don't care. As I have interacted with health care professionals I have learned how much they truly care and want to engage with their patients. I have seen that they too are frustrated that they cannot make a greater difference in the lives of their patients.

 I read an interesting article recently. (I have attached the link at the bottom of this blog.) The article talks about how patients can better manage their chronic health conditions if they had better access to their health information. Some of the examples are really interesting. The article focuses on some technical advances that gives patients information through an app for their smart phone. That's a great advancement but what the article seems to avoid is the need for more interaction between patient and health care provider. Having an app that provides you information is great but it seems to reinforce the idea that patients do not need to have direct access to their health care providers. This is where the gap in communication between patient and doctor exist. A 5 -10 minute "verbal" conversation between you and your Doctor every 6 months is not effective communication.

Fortunately some of these attitudes are changing. In our own situation, we have developed a great relationship with our Cardiology Clinic (Pediatric)where we get blood test results usually within a day and we can effectively manage our son's anti-rejection med levels, his hemoglobin, and his urea and creatinine. We do this all over the phone and it is really quick and effective. Because we have access to the information and a nurse clinician to speak to, we can make any changes we need to and interact to gain a much better understanding of what is going on. This allows us to live a life with a lot less stress, and more importantly because we have more knowledge we can provide more meaningful feedback when we go for a clinic visit and meet with our cardiologist. This is real patient engagement where we (as parents) and the clinic are both equally engaged.

Unfortunately, the same does not hold true when we interact with Adult Cardiology when discussing my wife's health. Trying to speak to a human to get an answer to a simple question is pure agony. You get voicemail, and if you manage to talk to someone, they won't discuss particulars over the phone because of "privacy" issues. If you get past that, then they are reluctant to answer any question no matter how simple without discussing it with the Doctor. Then there is my favourite response of, "if you feel it is serious; perhaps you should go to your nearest emergency room." The frustrating part of going to the emergency room is that Emergency is not equipped to deal with a complex cardiology patient and you will likely end up waiting for hours just so that you can talk to the person you had previously talked to on the phone. It is a never-ending cycle of futility.

It was refreshing to hear a nephrologist speak a few months ago about how she believes it is now becoming a standard of care to be more accessible to patients. She shared how she gives her patients her cell number and her email address. It was so refreshing to hear a specialist advocating for this level of access. She explained that when she first started handing out this information, she was nervous about doing so; fearing she would be inundated. In reality, the volume of requests from patients was very manageable and in many ways made her job easier. Clinic visits became more effective as patients felt much more comfortable and open. It was a win-win. It is really encouraging to hear about the health care system being more open about communication and technological advancements to help provide patients with more information. I just wish someone would mention this to Adult Cardiology.

The reality is effective family centred care and patient engagement are all about "effective" communication and openness. Very big words that are not always understood.


 http://www.cihr-irsc.gc.ca/e/48472.html

You've come a long way baby!

August 5, 2008 will always be remembered as a "perfect" day. Susan and I made the trip to St Boniface hospital in the very early hours and in a few short hours our Russell would be born. From beginning to end it went absolutely flawlessly. This is especially a fond memory considering the train wreck that took place only a few weeks after Russell was born and our 6 month stay in hospital that ensued. The memory of this day had nothing to do with cardiomyopathy, transplants, medication, or any of the medical issues that have become entrenched in our lives. Today is our son's 6th birthday. Especially significant as we were unsure if he would ever see his first. He truly has come a long way. We have much to celebrate and much to be thankful for. Of course this day would never be possible if it had not been for the dozens of Doctors and nurses who cared for our boy. There is also the obvious gratitude we feel to our donor and their family. Last night we dug into our picture archives to reminisce. We looked through our Nicole baby pictures and then our Russell pictures. Susan chuckled as the files are all dated. For Russell we have pictures from august and september then nothing until December. Our hospital pictures have been filed separately. Russell is old enough now to begin to understand some of his "rocky" history. Looking at old pictures like this is one of Nicole's favourite activities but for Russell it is not. We could see him last night curl up on the couch and recoil a little. He was expecting to see "hospital pictures". This is why we separated them. Russell is at an age now where he understands the fear and pain of hospitals. To him this is not a happy memory. He has not put this in the past and moved on; it is still a part of his life. When we share our story, most people hear about how we came home from Edmonton in March of 2009 and many want to hear it was happily ever after. In essence this is when the work began. We have had one issue after another. The transplant was a success, but as any transplant patient would attest, it is what you have to do or how sick you have to be to get there that has a huge impact on later life. Russell's life will forever be a life that involves medications to suppress his immune system to prevent rejection. This is surprisingly one of the least complicated components of his care. Being in a hospital bed for 6 months and being tube fed for almost a year after; that has long lasting effects. Russell still struggles with eating and his development has been all over the map. This week is a great example of our life. Today we are celebrating Russell's birthday and it will be a great day. On Friday we have an appointment with endocrinology. That won't be so fun as Russell is clinging to the growth chart and there is a possibility that we may have to do treatment for his growth. One step forward...two steps back. This is the way it has been for 6 years. Our little boy is complicated; and this is our new "normal". Most stories about a heart transplant imply that once all of the waiting is over and a donor heart is finally located; then you have your perfect "hollywood" ending. That's not quite true. The transplant is an amazing gift but there are many steps leading up to the transplant and a lot to recover from after. This doesn't sound encouraging and may even be a little depressing but we have had many highs and many lows. We have had to learn to adapt to that. Today is a great day...and we will celebrate with our boy. He has changed so much in the last little while; he truly is a real character. We savour these moments as we encounter the challenges ahead. What keeps us going is that every moment we are with our boy we know, in spite of all that we have been through, that his life could have ended a long time ago and we would never have had the joy of getting to know this little character. He is 6, he drives us crazy at times and many people who meet him comment on what a huge personality he has. It would have been a tragedy not to have gotten to know this little boy. Happy Birthday Russell...you truly have come a long way.

Another 911 call...really????

Those who know us; know that our family is no stranger to drama. Despite our best efforts; we try to lead a quiet and normal life. For some reason, we seem to be involved in far too many life altering experiences. If not in our own lives but now in the lives of others. I was just leaving work yesterday afternoon, when I received a text about a roll over that occurred right in front of our house. From the few brief messages, it sounded fairly spectacular. When I arrived home there were no less than 8 RCMP cars parked in front of my house. I was very grateful to have been given a warning about this as if I had come home without knowing the circumstance I would have likely been a little freaked. This wouldn't be the first time an ambulance was called to our home. It became quite evident that the accident resulted in a fatality. The accident was witnessed by our kids and I could tell immediately they were quite unnerved by the situation. Kids have an interesting way of making situations very real. When they are upset they are pretty good at conveying their feelings.

This was a really sad incident as in this situation the driver was thrown out of the vehicle and was obviously not wearing a seatbelt. When we got a look at the vehicle, and the damage, it became very evident that if the driver were wearing a seatbelt they would have had a fighting chance of surviving. It's quite frustrating to see a situation like that and realize that it might have been preventable. I think everyone takes different things from a tragedy like this. I think it is really important to take situations like this and try to learn from them. The most obvious lesson, was the discussion we had with our kids and the reminder to them why we, as parents, insist on them being properly strapped in to their car seats and the importance of buckling up. After looking at some of the pictures that were taken. I noticed something interesting. A group of 5 people standing next to an ambulance in the aftermath of the incident. These people were the people who were travelling on Hwy 202 and saw the accident and stopped to help. I have no idea who these people are but I think they are typical of many people who see a catastrophe and without thinking, stop and help. There is no thought put into this. No consideration of age, race, or belief. These people stopped, pulled the victim out of harm's way and attempted to perform CPR. There is so much negativity in the world, it is worth noting how people come together in a time of crisis. In the end, their efforts probably could never have helped this person but they tried and they undoubtedly will be remember this day for the rest of their lives. On a more personal note, as my wife and I discussed the events of the evening we were saddened by the fact that the victim, in this situation, likely died instantly, and could not have the opportunity to become an organ donor. This is an issue that it is very important to us. Many times we hear of accidents, such as this one, and we think that some good could come from it. When you have someone close to you have their lives saved by such an organ donation you do look at the world a little differently. It is also a reminder of how unique organ donation is. For an organ donation to be possible; so many circumstances have to be just right. For emergency personnel at a crash site, the thought of organ donation would never enter into the equation. That is a consideration and decision made a long way from a crash scene, as it should be. We have come to the realization how special and unique the organ donation we received truly was.

It's the Little Things that Matter

Another crazy week in the Lepp household. Like many busy families, we have a whole ton of things going on. Add in a medically complicated boy and a father who likes to get himself involved in health care, it makes for a very busy life. Yesterday was no different. Both Susan and I had busy days at work, then Russell's soccer game, and then I had a conference call with the Stollery Family Centred Care Council. With all of the running around, picking up the kids at school, and trying to get them supper. Do you think I had time to eat? Not a chance. When I scurried home after Russell's soccer game...I grabbed a banana and headed downstairs for my conference call. I logged in and began getting my self organized. I think I had left myself a whole 5 mins to spare. Just as our meeting was about to start I heard the doorbell. To my surprise there was a person at my door bearing a gift. A pizza! As soon as I opened the door I knew what was up. My friends from the Stollery had ordered me a pizza. During our meeting the group in Edmonton always has supper. For those of us who dial in...we have to watch them eat. For a treat they decided to let me and another Mom from Grande Prairie join in on the eats. The timing couldn't have been better. I was starved. Now that doesn't sound like a big deal. A very nice gesture. However, I began thinking to myself. How on earth did they manage to arrange this. We don't live near any place that delivers. How did they pull this off? When I got on my call and thanked everyone for their very timely delivery. I asked how they managed to arrange this. Apparently, one of the family room staff is pretty good at flirting on the phone. I won't go any further than that. So...a big thanks to our FCC council and specifically Heather, Kaitlin, and Marni for arranging for my supper. A big thanks. Also, a big thanks to Boston Pizza for being "good sports" and going a little out of there way to do a good deed. Thanks, Donald Lepp

...follow the Bouncing Ball...

Many people ask my wife and I how we cope when we have to deal with the "Health Care System". As we have been so immersed in health care over the past 5 1/2 years we have had an amazing education. The process has been amazing, frustrating, enfuriating, depressing and pretty much every emotion that you can think of. I can honestly say we have seen the best and the worst the system can offer. The events of the past month or so can give you a little bit of an idea what we deal with on an ongoing basis. From my previous post you know that our son, Russell, was scheduled for a Heart Catheterization this past Monday. For the second time in a month; it was cancelled. Surprising...No...frustrating...you bet! Since his heart transplant this procedure has been an annual part of his ongoing care. His annual Cath was orginally scheduled for the end of March. There are several appointments and blood tests that are done in the week prior to the procedure. It's a lot of work. At the end of March, Russell was going thru a bit of a cold. This wasn't a big deal but he was certainly not 100%. Because he was ill we, our Doctors and us, decided to postpone. A reasonable decision. Then we were all set to go on Monday morning. We were up bright and early at 5:30 AM on Monday morning and arrived at the hospital at 6:45AM. We went thru admitting and headed up to Day surgery on the 3rd floor. Everything was going well...we had reqeusted some pre-sedation for Russell to help mellow him out. We were just getting ready to do vitals and pop in the IV when we got the phone call. Our Doctor was ill and the cath would be cancelled. Yay...another day shot! Keep in mind i've booked two days of holidays off for two procedures that were cancelled. In addition, because we gave Russell the "dope"; the anesthesiologist asked us to hang around the hospital for a couple of hours until we knew Russell was OK with the sedation we had given him. Fantastic...hanging around a hospital is one of our favourite activities. Keep in mind, that we had asked for the pre-sedation (so we have no one to blame but ourselves) but who does that? Volunteer your 5 year old for drugs! The second indicator that we are a little "out there" is that when we found out that we were cancelled. Our first thought was how we could make this trip into the hospital a little more worth while. Let's do blood work! The lab opens at 8:00 (it was about 7:45)and we had not given Russell any of his meds yet. We have to hold his meds when we do blood work. We called our nurse clinician, who thought this was a splendid idea, and she gave us a requisition for the blood work. So not only do we like giving our son recreational drugs...let's stab him in the arm for good measure. Sometimes I really wonder about our sanity. So now we have a date for our third try at the heart cath. May 14th...hopefully things will go smooth but I guess we have learned to expect the unexpected. I guess this is one of the reasons that its hard for us to think long term. Everything in our life seems to be in a state of flux. We always get these curveballs thrown at us. In many ways we feel we are passengers in this life; certainly not in the driver's seat. Maybe there is something to be learned there.

Russell's Cath Day on Monday

Yes...Russell's Heart Cath is on Monday.  If memory serves me correctly this is heart cath number 7.  This is always a very long day.  Because Russell is still pretty young the have to put him under full anaesthesia.  Our day will start very early in the morning.  We'll probably arrive at Children's Hospital at about 6:00AM.  Russell will be heading into the Cath Lab about  7:45.  They usually spend most of the morning working on him and he usually heads up to PACU around lunch time.  During those hours Russell's heart is poked and prodded....literally.  It's quite amazing to think that they thread a tiny catheter right into his heart and perform a bunch of tests.  They measure pressures...they pump him full of fluid to see how his heart performs.  They inject dye into him so they can see visually how the heart is performing.  Finally, they do a biopsy at the graft site; where new heart meets Russell OEM equipment.  The tissue they take in the biopsy is sent to Edmonton where it is analyzed for any indication of rejection of the donor heart.  After we head up to PACU...we usually send an hour or so recovering and letting Russell wake up.  There is an internal policy that we must stay in the hospital 6 hours after he wakes up before we can be discharged.  So, they ship us up to Day Surgery to hang out and get the boy up and running.  We usually make our escape around 7:00 in the evening.  A very long day.

I mentioned that this is not our first heart cath; far from it.    However, we are still very apprehensive about these procedures.  There is some significant risk to this kind of "mucking around" they do to the heart.  The doctors may not describe this as high risk but we, as parents, certainly would.  We have never had an issue during a cath...but we know several people who have.  It is stressful.  There is also the added stress of; "what if they find something"..."what if there is rejection"?  I don't think we will ever get to the point where we don't worry.

Our experience doing Cath Day has always been different.  We don't have a 1 year old baby any more.  He is now a very active 5 year old.  We are dealing with a very different person now.  So our experience on Monday will no doubt be a bit different from our previous trips.  Having done this a few times; we are very familiar with the process and know most of the steps.  It is a big advantage to know what is going on and what to expect.  I think most negative hospital experiences have something to do with some kind of communication breakdown and losing touch with what is going on.  Being "in the dark" can be a scary and frustrating feeling.  The folks at Variety take really good care of us and they are so approachable.  It really gives us a huge sense of security to be working with people we know so well.

So, here we go again on another adventure.