Being A Patient Advocate

I spend a lot of time in hospitals and clinics.  Too much time.  You spend to much time in hospitals when you walk into a clinic and you are greeted like "Norm" from Cheers.  Not kidding; this actually happens.

I am typically in the hospital for one of two reasons.  I am either advocating for one of my "patient" family members or I am advocating for patients as a whole and trying to share patient perspective with hospital staff.

Advocacy makes me uncomfortable.  In that role i am negotiating and sometimes pleading for the interests of someone else.  I am uncomfortable with that role because; who am I to even know or understand what "my" patient is going through.  I can easily get caught between the person I am trying to provide support to and the medical system.  For my family this is a lot easier as I know them very well and understand them for the most part.  When advocating for "patients" as a whole is a whole different matter.  This is why I always emphasize that the only perspective I can share is my own.  I cannot speak for other people's experience.  Since, I got involved with patient centred care, and have been asked to speak on behalf of "patients," I emphasize one very critical point.  Inviting one patient or caregiver to represent the "patient voice" is not meaningful engagement.  Patient experience is diverse and it is impossible for any one person to represent the perspective of all patients.

Being an effective advocate is not easy and as experience has taught me is extremely important.  It is easier to explain this as a caregiver with a child with complex health needs.  When my son, Russell, was an infant he obviously could not speak for himself.  As parents, we had to advocate for him on a constant basis.  There were many health decisions that we had to make advocating on his behalf. Many of these decisions involved subjecting him to procedures and processes that were not exactly pleasant.  We consoled ourselves with the logic that what we were doing was saving his life.  Susan, my wife, reminds me often about the times that we wanted to rip out all the lines and escape with him out of the hospital.  We had to be eternally vigilant with the care my son received as we were the only two people who were with him during his entire journey.  We often had to provide context to nurses and physicians that would read dubious notes placed in my son's chart.  It seems obvious the need for an advocate with a child.  This is why pediatrics is far more evolved when it comes to patient centred care as it is somewhat of a necessity.

In the adult health system, it is an entirely different ball game.  When I accompany my wife to her appointments I sometimes get disgusted looks as I present concerns or ask questions on behalf of my wife with her in the room. Keep in mind that she is living with a chronic illness and any physical activity leaves her exhausted.  Many times she needs someone to advocate for her because she is just too physically tired to engage in a discussion.   Although it is more common now to have a caregiver accompany a patient, it is usually an adult caregiver accompanying an elderly parent.  Being a couple in our 40's doesn't fit that mould.  That is usually one of the bigger challenges we face is that our health situation is somewhat unique and anything that is "unique" usually causes fits of hysteria from our health care providers who seem to function only on well established practices and protocols.  They don't do "unique."  After one of my wife's appointments we will usually discuss the appointment on the way home.  We always walk away having heard different things.  This is why it is so important to have two people in the room.  You retain a lot more information with two sets of ears instead of just one.

I live in constant fear for people who enter into the health care system unprepared like we were.  Not knowing what questions to ask, or knowing the "lingo" can present some real challenges which can be life threatening if real issues are not dealt with in a timely manner.  I am not exaggerating how important it is to be a strong advocate for yourself or the people you care for.

For me and my wife, we are constantly learning.  Every encounter we learn something new.  I certainly would not consider myself as an expert.  I often describe my level of knowledge as "just enough to be dangerous."

I wanted to pass along 3 key points that caregivers should remember.  These are not researched, peer reviewed, recommendation.  They are personal feelings from my own personal experience that have worked for me.  Having heard a lot of patient stories and being a volunteer these points seem to ring true for other people as well, but if you have another point of view I would love to hear about them.

Credibility

When you are caring for someone with a chronic illness you have to be prepared for the long haul.  I cannot tell you how important it is to be able to work with health care providers and get the service you need.  You become a part of the care team the same as Doctors, Nurses, and Technologists with one significant disadvantage.  These professional are not accustomed to working with "you" and they have a huge technological advantage over you.  You may be only working with a high school level of Biology which was the circumstance I was in.

How do you get a group of highly trained professionals to take you seriously and treat you like part of the team?  What I tried to do was establish my credibility.

One thing I repeat to myself as a supporter/caregiver is that I need to be part of the solution and not part of the problem. Offending the people who are caring for you or a loved one is not productive.  There are many approaches you can use to negotiate and convince medical staff to work with you and get things done.  Yes, you can demand and bully your way but i find that approach is effective only on a temporary basis.  Staff will start withholding information and the relationship may devolve into the "us" vs "them" mentality.  You will get less information and get more and more frustrated.  You CANNOT alienate the medical team who is caring for you.

One of the tools I use to be a credible care provider is to do my homework.  Do some research and educate yourself.  There is a wealth of information out there.  More importantly ask questions from your bedside nurse or when you get the chance, the doctor.  This is a lot of work and you have to pick your moments but you want to have intelligent questions ready.  Questions lead to interaction and two-way communication.  Take notes, or do what you need to do to make sure you are engaged.  This can also be therapeutic and give you a sense of empowerment.  To be very honest, most of what I know about health care I learned in the ICU.  Hours and hours in the ICU.  ICU nurses are some of the best educators out there.  Learn to be their friends.

When staff realize that you are engaged and are genuine in your concerns they are more likely to want to work with you.  The more comfortable they are with you the more likely they are to share information more readily.  It's about building a relationship.

I am stunned at some of the tidbits of information I have come across as the "professional" barriers come down.  You begin to realize these are more than doctors and nurses but real human beings.  The staff also begins to get to know you as a person as well.  This is the beginning of mutual respect (something i discuss later).  A really interesting example of this respect was when my infant son was being considered to be a recipient of a Berlin Heart (VAD).  Our team in ICU was conducting rounds with us and were encouraging us and sharing all the possible upside of the device.  During the conversation another ICU Dr walked by and over heard the conversation.  He stopped for a moment and commented that the last baby they had implanted with the VAD had died due to a brain hemorrhage related to complications related to anti-coagulation.  Boom!  That snapped us back into reality in a quick hurry.  The look the Dr received from the team who was conducting rounds was amazing...I am sure they wanted to kill him for saying that.  This was not the typical well rehearsed speech normally conveyed to parents; it was an example of a Dr letting his guard down and being bluntly honest with us because he knew we needed the truth and he had enough respect for us to share reality because he felt we were "part of the team."  Which leads me to my next point..."honesty."

Honesty

This is not about telling the truth as in "facts."  This is about feelings.  Having a serious illness is no laughing matter.  It sparks a lot of emotions and reactions.  Don't try to be someone you are not.  This is about being truthful with yourself.

Being in a hospital sucks.  Being sick sucks.  The medical processes usually suck.  No one chooses to be ill.  Keeping the stiff upper lip and putting on a brave façade doesn't help anyone.  If you are scared; say you are scared.  If you're apprehensive, admit it.  Maybe because I'm a man, and emotionally repressed, this may mean more to me than others, but there is something liberating about being honest about your feelings.  I am not condoning becoming an emotional basket case but you have to be honest with yourself about where your head is at.  If you are supporting a family member who is dying, don't go falling apart in front of them but if you are struggling with your feelings talk to someone.  It could be a friend, chaplain, councillor, whoever; but you can't keep things bottled up.  Maintaining your mental health is really...really important.  You can't be any help to anyone else if you are falling apart inside; it will eventually catch up with you.

I recall one night when Russell was in PICU, and this was some of his roughest moments.  I usually went back to the hospital in the evening as Susan usually did the early mornings.  I recall watching my son struggle.  Things were tense and very precarious for him at that time.  I was not in good shape, emotionally.  The bedside nurse knew it but didn't really know what to say.  I can't remember how it happened but we called the ICU Dr over just to get a feel for how he thought things were going.  I remember distinctly the question I asked the Dr.  "Can you tell me something so that I can go back to the hotel and sleep tonite?"  That was pure honesty.  It also caught the Doctor's attention.  The smile on his face got very serious and he paused, because he knew that the next few sentences out of his mouth would have a big impact on my frame of mind.  I shared blunt honesty with him and I got honesty in return.  I will never forget that.

Respect

Medical professionals are smart and highly skilled.  Don't ever forget that.  If you can get them to work with you, you can accomplish many amazing things.  I have been exposed to world class doctors and nurses and have been able to learn a lot from them.  I have some very specialized knowledge but I have to remind myself that I don't have the training and background that all Doctors have.  I am not a Doctor and I need to be respectful of my role.  As a care provider I am their for the patient.  Not to play armchair cardiologist.  My wife's cardiologist gets great joy in putting me "in my place" when i'm attempting to be a little too "smart."  It's just that gentle reminder I need to make me realize that I need to let her do her job.  However, living with the patient everyday I can help provide important info (context) that can help our doctors do their job.  Another role I have as a caregiver is that I can help with transition from the health care environment to our home environment where care does not stop.  Care continues at home and this is where a caregiver's role is even more important in helping create a continuum of care.  Because of this continuing care and the long term nature is why you have to be prepared for the long haul that can be life long.  Not for the faint of heart.

Giving medical professionals respect is even more critical when things don't go well.  Having participated in many committees and boards i have learned a little more about how the system works from the inside.  It is frustrating to see great doctors and nurses literally handcuffed by a fragmented and bureaucratic health care system.  Many people are trying to do the right things but they have so many systemic challenges to deal with they sometimes come off as less than competent.  In many cases this is a very unfair assessment.  In many instances I have now found myself working with staff to solve problems together.  Sometimes the voice of the patient or a caregiver with first hand experience is the nudge the system needs to make changes.  Through these processes I have gained a lot more respect for health care professionals and the frustrations they have to deal with.

The best advice I can give to people when things aren't going well is to be calm and focus on what is important.  The patient.  If you feel action is not being taken that should be; advocate.  Be respectful and ask questions.  If you need to be pushy, fine, but keeping in mind this is not about you it is about the best interest of the patient.  Work with the staff and not against them.  If you give respect; you will get respect.

Conclusion

I have discussed three principles I try to utilize as a caregiver advocating for my family.  Those being establishing credibility, being honest, and showing respect.  This is by no means an exhaustive list.  There are many more things that others could add but I think it is a start.  It is also worth noting that these principles are required by the patient and caregivers as well as the medical staff responsible for treating the patient.  It is a two-way street.  The bottom line is that you have to work together.  You shouldn't be doing this alone.

Participation Trophies

Much has been made over the weekend about Pittsburgh Steelers Linebacker, James Harrison, confiscating his kids participation trophies.

I have a couple of thoughts on awarding kids just for participating.

My son has had a very difficult first couple of years of his life.  I think the common term is "medically complex."  His medical history has had ripple effects for his development.  He is immature for his age and is overall developmentally behind other kids.  Because of his experiences many of his goals are a little different from other kids.  On the flip side he has skills other children don't have.  How many 7 year olds could act as a guide at Health Sciences Centre?

As a result my wife and I have had to adjust our expectations and how we encourage him.  In some instances, for my son, to participate in an activity, any activity, is a huge achievement.  Going to kindergarten was a huge issue for us.  There were times that we had to be pretty tough on the little guy.  I recall phone calls with the school where I had to talk to the principal and to my son and try to negotiate with them and not let my son take the easy way out on whatever task he was having an issue with.  We do need to hold the bar high and challenge our kids to succeed but we also have to be realistic.  Finding that balance is a big challenge.

My son is a really complex little guy.  I am immensely proud of him, he is one of the toughest individuals I know.  If he hadn't been tough as nails he probably would have not lived to see his first birthday.  He is also smart,  Most kids are a lot smarter than we give them credit for.  The know exactly when they have made a big achievement.  They also know when they have failed to meet expectation.  Trophies or certificates are meaningless.  It's how we as parents and adults react and interact with our kids that matters.

Last year my son was in swimming lessons.  He really enjoyed playing in the pool.  From the time he got in the pool to the time he left he had a huge grin on his face.  However, my son does like to make his own rules and listening to the instructor is not high on his list of priorities.  It was very obvious that one of the things holding him back was his fear of putting his head under water.  My wife and I talked to him about this and explained that learning this skill was important and that he would not learn to swim if he didn't set his fears aside and put his head under.  We tried a lot of things.  We would practise in the bathtub at home trying everything we could to encourage him and to address his fears.  He made a genuine effort but never quite got there.  When swimming lessons were done, we expected that he would not pass his level.  This didn't bother us as we were confident he would get it eventually.  To our surprise, our son actually passed his level.  When I checked the certificate and the evaluation I noticed that for this level he had to "attempt" to put his head under water; which he certainly did.  What surprised me was the reaction from my son.  He was angry when I told him that he had passed.  He knew that he was supposed to get his head under water and he knew he hadn't done it.  He took the certificate and threw it on the ground.  He was mad.

His reaction was partially my fault.  I had told him that he needed to get his head under water and he didn't make it.  Kids are smart they figure this stuff out.  With everything in life you need to have balance.  Not every kid gets to be an astronaut when they grow up.  That doesn't mean they can't achieve success in many other ways.  My son's greatest achievement is that he cheated death on several occasions.  He's had two open heart surgeries and has a heart transplant.  All before he was 5 months old.  He has achieved more in his life than many will achieve in a lifetime.  My son's participation trophy is participation in life.

A Walk Down Memory Lane

I had an interesting experience this morning.  I had a letter I had written, read on CJOB this morning.  In April of 2009 I was interviewed on Charles Adler's show.  This was the first time I had ever been interviewed or spoken publicly about Russell's or Susan's health care journeys.  This started what would become a passion for improving the health care system.  Before I started this blog I had a private blog where I chronicled our hospital experiences.  As I thought about this interview I pulled out my old blog as I was curious what I said about that first interview that took place in 2009.  Here is my only mention of the interview.  I think I've gotten considerably "wordier" over the years.  From this post I think you can tell I had other things on my mind beyond pandering to the media.

A Good Experience

Posted Apr 9, 2009 3:43pm

Well I'm glad that's over!

I wished everyone could have heard the conversation between the commercials. I must say that Chuck was very good to deal with and asked a lot of questions before the interview about what we wanted to discuss and things that were "off limits." I hope everyone got something out of it.

It was especially nice to get a visit from Susan and Russell after the interview. Russell had a Doctor's visit this afternoon and they never got to hear the interview. By the way, Russell is almost 16 lbs now...way to go Russell!

Donald  

Radio personalities can be polarizing.  I certainly don't agree with all of Mr Adler's opinions but there were many things that I think we definitely agree.  Diversity of opinion is a great thing.  It has been interesting crossing paths with media types over the past few years, but this first interview will be one I'll always remember fondly.

Here is the original copy of the email I sent to Charles Adler that I sent yesterday, which was read on the air this morning.  I really liked the way he read it and captured the tone I was trying to convey.

 Good morning,

 

First off, I want to wish you well on your move to the West Coast.  You will be missed from the airwaves in Winnipeg and I, and many others wish you all the best in the future.

 

On your last week here in Winnipeg, I feel we have some unfinished business that we need to resolve.  As you are someone who comes into our homes and offices, almost on a daily basis, I feel it is a worthwhile exercise to have a glimpse of how some of that influence has affected some of your listeners.  I can only share one experience and that is my own.

 

I had the privilege of being interviewed on your show in the spring of 2009.  This was a very tumultuous time for my family.  We had just returned from Edmonton where my infant son had spent 6 months in hospital which resulted in him receiving a heart transplant.  At the time, my wife was also very ill with her own heart illness.  We would be heading back to Edmonton for her own open heart surgery in June of '09.

 

This was the time when the story of Baby Kaylee Vitelli broke.  This was an infant who was diagnosed with Joubert Syndrome, a rare respiratory disease.  The story sparked numerous issues.  The parents in this situation were told by the Hospital for Sick Children in Toronto that their daughter would likely not survive the ordeal.  The story sparked a lot of discussion as the parents in this case wanted to donate their daughter's organs in case she were to die.  They not only wanted to donate the organs but direct to whom the organs would be donated.  This sparked a lot of controversy.  The whole story had a lot of moving pieces and was a media circus.

 

Having just had a child receive a transplant, and hearing about this story on the radio, I sent an email to your show. I was concerned about some parts of the story that did not seem consistent with the experience we had just been through.  Organ donation is an extremely important issue to me and my family and I felt there needed to be a better understanding of the organ donation process.  I still believe that to this day.

 

After sending my email, your producer contacted me and I found myself being interviewed on your program.  There wasn't a lot of time to prepare for this interview.  I still recall talking to you on the phone just prior to the interview and during commercial breaks.  I remember you checking with me to see if everything was "OK".  I was impressed that you were concerned about the direction the interview was going and that "our" story was being treated with respect.  It was a very positive experience.

 

It was on your show that I shared our family's transplant story for the first time in public.  I knew our story was rather unique but I did not realize until after I was on your program that I could positively impact others by sharing our experiences in a public way.  Since that radio interview in 2009, I have shared our story many times and I have become a relentless voice and promoter of patient and family centred care and an advocate for better health care.  My volunteer life has in many ways taken over my professional life.  I am on numerous boards and committees and have been exposed to some of the most brilliant people in health care.  It has been an amazing journey.  I have spoken at medical conferences, been interviewed on several occasions, and written a few op-eds.  I couldn't have ever imagined doing these things a few years ago.

 

Being on your show 7 years ago was not a life changing event but it certainly did start something.  Your show, and the topic you were discussing, prompted me to write an angry email and you were crazy enough to put me on the air.  Two crazy people trying to make a point and attempting to make things a little better in this world.  Your words do impact people, and although we may not agree on everything; you have on many occasions forced me and many of your listeners to think.  That is a great legacy.

 

Thanks for the memories, good luck in the future and God Bless!

 

Donald Lepp

Lockport, MB

Patients as Health Experts

A few months back at one of my meetings, at the Stollery Children's Hospital, the topic of access to the patients' chart came up. This is always a thorny issue for hospital folk because it can be quite contentious.  Everyone talks this wonderful game about being in tune with the wishes of patient and being patient centred.  Discussing the "chart" is one of those issues where patient centred care is tested.

I was informed that, by policy, in order for patients to see their chart at the Stollery Children's Hospital, they must be accompanied by a staff member.  I am assuming this means a doctor or nurse.  This policy makes me chuckle.  I am curious who explains the chart to them (the doctors and nurses).  Let me explain.

When my son, Russell, was transferred from Winnipeg to Edmonton, the ER team here in Winnipeg described him as having "seized".  There term not mine.  On the front page of the chart was a description of what happened in Emerg the night he was admitted and there was the comment "query seizure."  Medical professionals are highly trained and very smart people.  This does not mean they don't use poor terminology on occasion.  The phrase "query seizure" caused us a great deal of hassle when we arrived in Edmonton.  Every time a new physician came on service they would familiarize themselves with my son's chart and get a "feel" for his medical history.  Of course, on the first page of his chart is "query seizure."  This would immediately begin a conversation and in some cases result in neurology being brought in to consult.  After a while we, the parents, clued into this silliness and explained in no uncertain terms he did not have a neurological event (seizure) in the conventional sense.  The correct terminology would have been cardiogenic shock.  We had to repeatedly interpret the chart for the doctors and nurses who would glance at the front page of his chart and draw the wrong conclusion.

There have been several other occasions when we had to interpret the chart for our attending physician.  We realized how critical it was to be there and to advocate for our son and provide our knowledge.  In our adventures in health care we have been able to prevent unnecessary testing and in some cases avoid lengthy hospital stays because we had information that was either missing from the chart of poorly recorded.

One of the biggest frustrations I have is the lack of respect we, as parents, receive about our knowledge of our health.  Doctors don't like being "shown up" by mere patients.  My wife and I have been exposed to some very specialized cardiac training.  I love getting into technical discussions with Doctors, I get so much valuable information and it helps me be a better care provider.  How specialized our knowledge was driven home on a visit to my family doctor.  I began sharing about our experiences in Edmonton, discussing transplants, LVADs, ECMO, and all of the cool stuff we were exposed to.  He had to stop me and he explained that he didn't have a clue what I was talking about.  That shocked me.  I appreciated the honesty but it opened my eyes to the fact that we were not conventional patients.  The honesty that my family Doctor displayed however is not what we always encounter.  If we go to a walk in clinic or to the emergency room we have to give a medical history.  With my son, we typically get asked what his heart condition was prior to his transplant.  First off, who cares; the old heart is gone.  Why would it matter now?  Then we explain what the condition he had...Left Ventricular Non Compaction.  A few Doctors will know what it is or at least can take an educated guess. Others will just give you a blank stare and smile because they don't have a clue what you are talking about and they aren't going to admit they don't know.  It becomes an ego thing.

As I stated before, Doctors and Nurses are smart people.  They have a lot of knowledge that can be very helpful to us but it is time that the Doctors and Nurses acknowledge we have a lot of knowledge too.  We are experts.  Not in the traditional sense and sometimes we butcher Doctor speak a little but we do know what is going on and we definitely know when things aren't right.  This is why it is appropriate to occasionally knock Doctors off their lofty perches and make them realize they don't know everything and I am totally OK with them admitting that.  After all we are all human and we are supposed to be on the same team.

Cardiology...the Good...the Bad...and the Ugly

It has been a while since I got "techie" about cardiology and what is going on with us.  We have to keep reminding ourselves that our family is unique.  It is not normal to have a 6 year old with a heart transplant and a Mom who deals with significant heart issues herself.  We have many friends who are either one or the other.  They are either a family dealing with a child with significant cardiac issues or a friend who is dealing with cardiac issues as an adult, but not both.  Being "unique" is both a blessing and a curse.

Although we talk and post less about our health issues and how we manage, we are still very much very busy with all of our various clinic visits and endless follow ups.  It has just become part of the ordinary.  The new normal.

Because we see both pediatric and adult cardiology it also gives us a very unique perspective on how patients are treated in the pediatric world versus the adult world.  It is a very different experience.  In the future I am really NOT looking forward to being in the geriatric world as that is like being sent to the gulag as far as health care is concerned.  Fortunately, that is many years away.  Many...many years away.

Pediatrics, in general, has learned to be more patient centred out of necessity.  Young children cannot speak and advocate for themselves and need an adult to be there for them.  Actually, I should re-phrase that.  Children can be effective communicators but sometimes it is just more difficult to interpret what they are saying and other times they are so clear you have to dial it down a notch.  The family dynamic in peds forces doctors and nurses to be more in tune with what is going on not only with the patient but the whole family.  When we are working with adult cardiology it is a completely different experience.  You get half of the information and it seems far more structured.  If you don't fall into specific parameters you can easily blow up "their" well conceived processes.  With kids, to some extent, the staff can improvise and adapt based on the child or the family.  In the adult world you must comply with the "program".

This is the challenge we have with adult cardiology.  They are not flexible.  Unfortunately, we break a lot of the preconceived ideas the cardiologists have about us.  Susan in not in her 60's or 70's.  When she was diagnosed with cardiomyopathy she was 38.  Not the typical cardiac customer.  She has no issues with blood pressure, retaining fluid, blocked arteries etc.  If she shows up to Emergency with chest pain she is not having a heart attack.  Her chest pain comes from pressure building up in the heart because her heart just can't squeeze all of the blood out.  If some idiot were to give her nitro they could kill her.  This throws most medical practitioners for a loop.  She breaks almost all of the rules that you would assume of an adult with a heart problem.

When Susan has been admitted to hospital we try very hard (and without success) to ensure that she does not get the standard "low-salt" diet that they automatically assume she should be on.  Susan does not have high blood pressure!!!!!   Although a low-salt diet is healthy, the flavour, or lack thereof leaves a lot to be desired.  So when the flavourless meal tray arrives, yours truly is immediately dispatched to the cafeteria, or local McDonalds, to retrieve a handful of those elusive salt packets.  When I return to the cardiac ward with my pockets brimming with little white packets of salty goodness I feel like someone smuggling a file into a prison.  The thought has crossed my mind to sell these little packets on the ward.  Face it, salt on a cardiac ward is the equivalent of crack.  Honest....I've never actually done it.

Low flavour food is a relatively small problem but is a symptom of bigger problems.   I think what frustrates us most is the limited amount of information we get.  We get treated like we are on a "need to know" basis and apparently we don't need to know.  We are particularly sensitive to this because of Russell.  His doctors share tons of info with us.  In some cases possibly too much.  We have been to "cardiac war" with these people and lived to tell the tale.  We had one of the cardiologists from Edmonton come to one of our recent clinic visits.  He was really intrigued by the fact that our son and his mother both had congenital heart defects.  It is unique and i am sure the scientific mind got the better of him.  We spent most of our pediatric appointment discussing the adult patient, Susan.  He made the comment "so you are being seen by both pediatric and adult cardiology."  It is quite shocking to think that in some ways we have gotten more information about Susan's condition from Russell's Doctors.

Don't get me wrong.  Most of the cardiologists who have seen my wife have been very good and well
intentioned.  They just don't know how to deal with us.  We are kind of unique remember.  Our last clinic visit started very strangely.  Susan had just had an echo and we assumed we would be discussing the results.  The Dr walked in and did the normal pleasantries.  Then he asked a bizarre question.  "Does anyone in your family have a heart transplant?"  Susan and I started to laugh.  We then explained..."why yes" "our son!"  After the Dr collected himself and began to understand who he was dealing with; he dropped the topic and went on to the rest of the exam.  Just a tip to any Dr reading this.  Don't drop a loaded question like that on a patient and just leave it.  As you could expect, at that point we were expecting bad news from the echo.  The Dr shared the results and really didn't share anything earth shattering.  It was a fairly normal clinic visit.  It just left us wondering...why did he ask that question???

I guess the problem Susan's Drs have is that we are probably more informed than the average patient they see.  We have a son with a heart transplant.  I think they assume that we would be pushing for a transplant because that would solve all Susan's cardiac problems.  If they talked to us they would realize that Susan knows what you have to go through to be listed for a transplant.  In addition, the thought of another open heart surgery is not anything Susan has any interest in.  The thought has crossed our minds many times.  Why don't they just talk to us?  We aren't that scary.  We want to work with them but they insist at keeping us at arm's length.  I don't understand that.  I would think that scientists working in a health care environment would be curious about us and that we would be intriguing.  We certainly are not dull.  Unfortunately, there seems to be a "white coated" barrier between us and them.  It is sad as I think many of these people could become better doctors if they just let their guard down and treated us like a human and not a "case." They can learn lots from their patients if they really engaged them.

Happy Fathers Day to Me!

It's been a great morning.  Nicole and Russell are getting to the age where events such as Father's Day are a lot of fun.  They both have such distinct personalities.  It's a lot of fun to see what they will come up with next.  They are not babies anymore.

When you are a parent, you have to remember the small things.  Yesterday, Nicole and I played catch.  Not a big event...we've done it many times.  Yesterday, we used real baseball gloves and a real baseball.  Again, not a big deal.  It was just one of those moments that I know I'll think about years from now and will put a smile on my face.

This morning Russell gave me his Father's Day present to me.  It was a picture frame that he decorated with a picture of him in it.  It was a nice picture.  Russell is a real pain to take a picture of and we have dozens of pictures of him with some kind of ridiculous facial expression.  Very frustrating.  This was a really nice picture and i'm really curious how many tries it took to get this one.

I have two of the most unique kids.  I guess the story of our "family" began in the parking lot of the Heartland Fertility Clinic when we were about to go in to get "test results."  (You were wondering where I was going with the parking lot reference weren't you...lol).  After many years of trying we had a pretty good idea what the "results" were going to be.  Susan and I, had a short conversation in the car and resolved that if the news was that we couldn't have kids the biological way; adoption was an option for us.  It was a natural fit.  In January of 2002, we attended our first seminar and began learning about the adoption process.  Over the next year we filled out paperwork, and attended classes and worked at getting the pieces all in place to adopt.  A process we had no control over.  I am still a firm believer that anyone thinking of having kids biological or not should go through this process.  We learned so much through that process.

After Nicole arrived on the scene we were feeling pretty good about ourselves.  She spoiled us.  She was healthy and happy.  She slept, she ate, she grew like a weed.  Couldn't have wished for more.  Then the "Russell" came along.  If we thought Nicole was unique Russell certainly took things to a whole new level.  The training we got during "adoption school" really paid off when Russell came on the scene.  As part of adoption school, we were given some basic information on children with special needs and I think we still draw upon some of that very basic information we received.  When we were in hospital with Russell and the discussion about a heart transplant came up we couldn't help comparing adoption to the transplant process.  In some ways adoption prepared us for this.  I think some of the medical staff looked at us a little odd when they explained the process to us.  Our response was; transplant is just like the adoption process.  A process that we had no control over and that for us to receive a gift someone else has to give up something very precious.  Our second adoption was when Russell adopted a new heart.  This "adoption" became even more evident after Russell received his transplant and was recovering in PICU.  As the hours went by you could see Russell and his new heart getting acquainted.  Hour by hour the two of them began to work together and form a new bond.  In adoption, we were always taught about the "bond" that had to take place when an adopted child comes to their new home.  It is amazing how similar the emotional and physical bonds work.

It is a concern having one adopted baby and one bio baby.  They are both special and have there own unique history but you do worry, as a parent, that you will treat them differently.  I guess we all treat our kids differently in some ways.  They have different personalities and different likes and dislikes.  You do have to adapt as a parent to each child.  It is something that is hard to do at time to keep that balance.

Our life seems like a never-ending story; and we wonder what will happen next.  Hoping our best days are still ahead of us.  Thinking back to that day when we discussed adopting for the first time I could never have imagined what adventures we would encounter.  I never thought becoming a father would be anything like this.

Our Adoption Story

Today in Manitoba Adoption Records are being unsealed.  Records going back as far as 70 years are being released.  This is a big step for adoption.  Adoption needs to be better understood in today's society.  Adoption in the present day is much different than it was 30 or 40 years ago.  Surprisingly, adopting a child born in Manitoba is quite rare.  The wait lists are long.  This is why many parents opt for international adoption which gives parents better odds of being able to adopt.

Fortunately, for us our adoption story was very amazing and couldn't have worked out much better.  I posted our story before but I think today it is worth re-posting.

The chances of us having kids was very unlikely and we had opted to look at adoption as a possible option.  In February of 2006, my Dad was dying of cancer and Susan's Mom was waging her own battle with cancer.  We discussed with our social worker at that time, the possibility of coming off of the adoption list temporarily to let our lives settle down a bit.  We talked about it and decided not to de-list.  If an opportunity came up we would seize that opportunity.  Besides, we had no real control over the situation, the opportunity to adopt could happen in a week, a year, or never.  We are so happy we made that decision as Nicole was already on the way.  I remember so vividly the day we got "the call."  It was the Tuesday following Easter.  I got the call from our social worker that there was a potential baby available and were we interested??  It seems a little bizarre when we think back...that someone was phoning us to offer us a human being.

When we got the call...we know this was far from being a "done deal." In fact we thought chances were that this wouldn't happen at all.  After all it was the birth mom's choice as to where her baby would go and we knew she was looking at a couple of other potential families.  Having never been through this before, it seemed a little unbelievable and that it may never happen.  I don't remember the exact order of events but that evening when Susan and I both had a chance to absorb the situation and read the adoption profile we had a follow-up discussion with our social worker and asked her a few more details.  We found out that the baby was due in about a week and that the birth-mom wanted to meet us.  A meeting was setup for that Friday.  I think we were remarkably calm during this time...as I think we really didn't understand the gravity of the situation...it was just too unreal.

Friday morning came (the day of the meeting).  On the way to the appointment, I commented to Susan that we are going to meet, have a nice chat, and in all likelihood this wouldn't happen.  The birth-mom will likely choose someone else...but this was a good experience to go through, so we would be better mentally prepared for the future.  I laugh when I think about how unprepared we were for that meeting.  We really didn't have a clue.  One of the reasons I love our Social Workers from CFS is that they would never put a family through this process unless they were pretty sure it was going to work.  They look carefully at the birth-mom and the family and put all of their eggs in one basket.  They want this to work.  We didn't realize it at the time but they were pretty much sure this was going to happen before we met.  Again, there are no guarantees, but they definitely had a game plan.  After a 45 minute, somewhat awkward visit.  We found ourselves making appointments with lawyers and making arrangements for temporary guardianship in the event the baby were born over the weekend.  Papers had to be filed that day if we wanted to take the baby home, as this was a Friday.  Susan and I were absolutely stunned!!  We had to take our social worker aside and we very sheepishly ask "is this happening"??????  She must have been laughing on the inside, but she very calmly said..."Yes...it is!"

We were dazed!  In a few minutes we were driving on our way to our lawyer's office to begin the legal process of adopting our, yet to be born, baby.

We made a few phone calls to family to let them know what was happening and then we began thinking about all of the things we needed.  We didn't have a clue.  The first thing that was mentioned to us was that we needed a car seat to take our new baby home.  There is a baby store a block from where Susan works so we thought...hey why don't we take care of this right now.  We wandered into the store, and began looking around.  We didn't have a clue what we were doing or what we were looking for.  After some time a store clerk offered some assistance.  We must have seemed like total morons as we didn't know what to ask and had no idea of what we were looking for.  I remember the clerk asking..."So when is the baby due?" and we said "next week" to which the clerk responded with a bit of a puzzled look as she glanced at Susan's not pregnant belly.  We were so overwhelmed by all of what had happened that morning we were in no frame of mind to be buying a car seat, so we graciously thanked the clerk for their help and exited the store.  The car seat purchase would happen another day.

The weekend passed with no news.  We exchanged a few e-mails with our lawyer and our social worker as we had several questions about the process.  We had several hurdles to overcome before this adoption would happen.  Yes, we had a verbal commitment, but we still had legal hurdles and the dreaded 21 day waiting period.  By the time Monday rolled around, we were already well into the process of getting..."baby supplies."  We went back to work and attempted to put all of this out of our minds as we "waited."  Monday, Tuesday,  then Wednesday.  No word and no news.  The pandemonium of the previous Friday had now transformed into boredom.  When is this baby going to be born, would it be healthy, would it be a boy or a girl?  Imagine all of the questions, fear, joy etc of 9 months of pregnancy packed into a week.

On Thursday afternoon,  while picking up some drawings for work, I stopped for gas.  While I was filling up...my cell phone rang.  It was our social worker, and the news we were waiting for was finally here.  "You have a perfectly healthy little girl."  Wow!  Never in a million years did I imagine that I would find out I was a father at a Coop gas station and that I would have to phone the baby's new mother to let her know.  I quickly detoured on my way back to work and stopped by to see Susan.  Susan met me outside...we got in my truck and had a "moment."  We cried (I NEVER cry) and I don't remember who said it but I know we were both thinking it..."What did we just get ourselves into?"

Nicole's adoption was what is known as an "open" adoption.  "Open" meaning that the birth mom and adoptive parents all know each other and can have the ability to maintain contact.  The choice of where the adoptive child goes and how the adoptive family is chosen is a matching process performed by the Provincial Adoption Registrar who creates a "short list" of perspective families.  These profiles are then given to the birth parent/s and they select based on their own personal criteria.  We as perspective adoptive parents have no part in the process other than providing input for the profile such as pictures and an introductory letter.    This also makes these adoptions very unique and personal.  What we experienced could be very different from someone elses adoption story.

After Nicole was born; this "lack of control" could not have been more evident.  We were on cloud nine but we could not see her yet.  To be respectful and with the social workers advice we wanted to wait until the birth mom invited us to see the new baby girl, who at this point did not have a name.  Perhaps the birth mom did not want to see us, she could have second thoughts, there were many possibilities as to how this would play out.  I think this is where the social workers did such a great job.  They kept talking to birth-mom and kept us informed about what was going on.  They kept everyone on an even keel during a very emotional time.  The first news we received was the basic height and weight information and that the baby was perfectly healthy.  Mom, however, had some post delivery complications which put everyone on edge.  From our understanding the complications were not minor in nature.  This just added to the stress.  So the night our daughter was born we went ...shopping; not because we needed to but because we were going stir crazy sitting at home and "waiting."

Thursday slipped away and then it was Friday.  Still; no news.  Sometime on Friday we were called by our social worker to let us know we had been summoned to the hospital.  We agreed to meet on Saturday morning.  We were going to see birth-mom first and then the "BIG" introduction.  We were also informed that birth mom would be meeting with her lawyer on Saturday afternoon for her to declare her intent to adopt.  This is a critical part of the legal process.  This would allow us to take our newborn daughter home from the hospital.  So...Saturday was the BIG day.

With great anticipation and mustering every bit of parental confidence we could we headed to the hospital on Saturday morning.  We met birth mom and exchanged some small talk.  Keep in mind that we had only met her once before and only for about 45 minutes.  We were basically strangers.  Our birth-mom is an extremely easy going person and although I wouldn't describe her as chatty but nonetheless easy to talk too.  Then the big moment.  Our little girl was wheeled in from the nursery.  You would think that moment would be vivid in our memories as "the moment" but it is not.  I think we were so concerned about etiquette and trying to be respectful I think we lost ourselves for a bit.  Our girl was truly perfect.  The day before we had found out that our girl did have a name and that it was Ashley.  This was chosen by her birth mom for the registration of live birth.  Our initial reaction was that we liked the name and intended on keeping it.  We did have the choice of choosing our own name, but we were ok with Ashley.  Baby names were not high on the priority list at this point in time.  Our visit on Saturday morning went well.  After a few hours, and knowing that the lawyer was coming in the afternoon we made arrangement to come back in the evening.

When we came back, that night, we found that the lawyer had come and gone and that the papers that needed to be signed; were signed.  We were very pleased to hear that the lawyer spent some time with our birth-mom and they even went on a walk together.  It sounded like they made a good connection and things were going very well.

That night we visited some more and gave baby Ashley her first bath.  We found out that the plan was for birth mom and baby to be discharged the next morning, Sunday.  We would be taking "our" baby to "our" home the next day.  Needless to say we were a little anxious and a whole lot excited.  Could it really be this easy?

When we went home that night and made final preparation for the next day's homecoming.  We had a bit of a "moment" as we were trying to get used to the idea of having baby Ashley around.  I remember talking to Susan and referring to "Ashley" and Susan said "who?"  It was probably at that point that we figured that we needed our own name for her.  We liked "Ashley" but it just didn't have that "fit like a glove" feeling to it.  It was that night, quite by accident, that the name "Nicole" came up.  OK...it's corny...but the name Nicole actually came about while we were watching a movie...the Interpreter...with Nicole Kidman.  Yes...our daughter is named after an Australian actress.

Sunday morning came and we buckled the baby seat into the car and headed to St Boniface hospital to fill it.  We were kept fairly busy, at the hospital, doing administrative stuff and getting last minute instructions.  Our social workers where their to help with the transition.  The only request our birth-mom made the whole time we were in the hospital was that she wanted to spend time alone with baby Ashley, say goodbye, and then she would leave.  I remember it very well.  Our birth-mom walked out of the hospital room with a back pack over her should and left...without a baby.  Ashley was now ours.  This was "our" moment.  This was when this all became real to us.  This was our birth story, at this moment.  We spent a bit of time gathering up some items and said goodbye to our social workers and strapped our little girl into her car seat.  I remember what our social worker said when we left..."have a good life."  That really sticks out in my mind as although it was a very trivial statement it meant a whole lot more.  Although we still had some legal process to go through...we were done.  Our baby was coming home.  At noon on Sunday, with church bells ringing, we walked out of St Boniface hospital with our daughter, Nicole.  We took pictures outside the hospital, a ritual we repeated two years later.

Our 21 day waiting period came and went.  At any point in the first 21 days, the birth-mom can change her mind.  This is probably every adoptive parents most feared time but with us it came and went with no issue.  In August of 2006, the final adoption was legal.  A new registration of live birth was filed with the name of Nicole Ashley Anne Lepp being born to Donald and Susan Lepp on April 27th, 2006.  That single piece of paper hardly tells the whole story.