Managing Procedural Pain: Moving from Theory to Reality

Tomorrow is the big day.  We are heading to the hospital at 6:00 AM for Russell's annual Heart Catheterization.  This is THE test we do every year to check on the function of Russell's transplanted heart and to do a biopsy that is used to check for any signs of rejection or coronary artery disease.  That carries with it it's own apprehension and stress.  The fear that something may be wrong.  Fortunately, we have had consistently good results in years past, and we have no reason to expect any different results.  However, the fear of the unknown does linger in the back of your mind.

The short term goal for tomorrow is to get through the day with the minimum amount of disruption for Russell as possible.  That has proven to be a significant challenge, and last year, despite our best efforts was an unmitigated disaster.  We're trying to turn that around this year.  For those who don't know what happened last year.  Here is a link to my blogpost from a year ago and a description of what happened.

Russell's Heart Cath - 2015

Susan and I have tried to get a lot more information on how to manage Russell's fears and anxiety.  This is challenging because Russell knows exactly what is coming and is quite knowledgeable in his own right.

Fortunately, we have a good team that has been very receptive to our concerns and have made many suggestions.  We have input from mental health specialists who have conveyed some strategies for dealing with the anxiety leading up to the procedure but we also have spent some considerable time at our pre admit clinic discussing a comprehensive sedation plan.   We had a good discussion about what happened last year and reviewed the chart and I think we have made some changes that should work better this time around.

The Challenges

There is a good deal of information available related to procedural pain pediatric patients.  Lots of good strategies have been studied and have been proven to be very helpful.  Reading some of the literature I wish we had some of this information years ago.  However, the important  thing to keep in mind is that is really important that you know your child and select strategies that you think have the best chances for success.

As an example, one of the strategies that many have become big proponents of is "numbing cream".  The idea is to apply a cream to an area of skin to "numb" the area so that your child does not feel a needle insertion.  Personally, I am not a fan of the product (for Russell).  The creams used usually take quite a while to take effect, and my criticism is that it heightens the anxiety of the procedure by dragging out the process.  Keep in mind, Russell knows exactly what is coming and he is also a little guy with a lot of anxiety.  For him, the numbing cream is just as traumatic as the needle poke itself.  The tried and true method with him has always been to get in and get out as fast and accurately as you can.  Absolutely, do not drag out the process.  I also know that some parents think using numbing cream is fantastic and have good results.  This is the importance of knowing your own child and using what will have the best outcomes for them.  My strategy may (and should) change for other children.  For instance, using a numbing cream may be a useful strategy if we were talking about my daughter, Nicole.  She has very little experience with any painful procedures and if we asked her I am sure she would be very receptive to using the cream.  In fact our pediatrician has used several distraction techniques with her and they have all been reasonably effective.  My point here is that you have to know you child and not be afraid to tell your health care providers what will and won't work.

The Plan

Our plan for tomorrow has actually been in place for a few days.  We've spent a significant amount of effort discussing this with Russell.  We are trying to a lot more work addressing his anxiety.  It's been a challenge.  He gets agitated when we talk about it.  Occasionally, we get a question.  Those are great opportunities to talk through the issues.  We're trying to get him mentally prepared.  We are acknowledging the process and his fears.  These are real and we want him to be able to verbalize how he feels.  We are also trying to reinforce his successes.  He has an amazing knowledge and he has been through so many of these procedures.  We reinforce these successes in which there have been many.  The limited discussions that we have had we have definitely tried to keep him included in the process.  He has a say on what happens.  Any bit of control we can give him we will.  I would have hoped we could have had some more input from Russell but we are very slowly working through his anxiety and we won't solve all of these issues in a couple of days.  We hope that Russell has a sense that he has been included in the plan and the we will be executing "his" plan.

What Will We Do Different this Time?

Last year at this time, we thought we had a pretty good plan.  It didn't go very well.  Some of the things we will do differently this year has included some of the mental preparation as I have already discussed.  This is what we will do at home to prepare.  Much of what will happen tomorrow is the plan we developed with the anesthesiologist, at pre admit clinic.  The input we have received has been really interesting.  In the past, we had requested pre-sedation, (benzodiazipines) which has not been effective with managing any anxiety.  We won't be doing that this time.  No pokes will happen in day surgery.  The IV will only be started in the operating room by the anesthesiologist.  We are trying to greatly reduce the poking Russell would have to do before the procedure.

The other key strategy change this time around is that we have discussed taking our time.  We will be in no hurry.  If Russell is upset, we will take time to get him calm.  Pinning him down to get something done will not be an option.  In the past, when we got to the OR there seemed to be a rush to get things done and get him "put under."  Not sure why.  This time we will slow things down.  We spend many hours waiting for Doctors and Nurses, I think it is only fair that they should wait for us every now and then.

Talking the Talk vs Walking the Walk

Tomorrow we will put all of the discussions and planning to the test.  All of the theories and speculation don't mean anything if they aren't implemented.  I've been fortunate to have had opportunities to discuss our experiences and what we thing works as it related to pain management and procedural pain.  I've been lucky to have input into research projects on the subject.  I guess tomorrow we'll find out if we know what we are talking about.

Review: Vital Bonds - The Nature of Things

Memories are the key not to the past, but to the future. - Corrie Ten Boom

Profound words coming from someone who survived a Nazi concentration camp.  Memories have a profound impact on how we look at the world and who we become.  Our lives changed on October 2, 2008.  What took place over those 6 months is difficult to explain.  Last Thursday, we came as close as we ever will to reliving our transplant journey.

CBC, through it's longstanding program The Nature of Things was given unprecedented access to the University of Alberta Hospitals including the Stollery Children's Hospital and the Mazankowski Alberta Heart Institute.  Territory we know very well.  The program chronicles the organ transplant experience.  It follows several patients, both the donors and recipients through portions of their transplant journeys.  The openness in which this is presented is quite astounding.  All of those who participated in this documentary, put themselves out into the public at their most difficult times.  The openness is quite remarkable.  I have placed a link to the program below where it can be seen in its entirety.

Vital Bonds: CBC The Nature of Things Nov 17, 2016

How Real Was It?

First off, the amount of insider knowledge we had of this programming was stunning.  Several of our Doctors were featured in the documentary including Russell's cardiac surgeon, and Russell's transplant cardiologist.  In addition, we recognised many locations in the hospital.  We recognised a lot of the subtle details.  The fish tank outside of PICU - the NICU - familiar signs - the rooms in which the family conferences were held.  It was so familiar.  Some happy memories that collided with some of our most awful recollections.  Seeing an infant laying on the operating room table, was particularly difficult to watch as I remember that like it was yesterday.  It was like we had rewound the clock 8 years and were back in the Stollery.  It was that vivid.

It was also amazing to see an infant child featured.  To have this strike even closer to home this was a family from Manitoba, just like us, who had left one child at home to take their other child 1400 kms away in hopes of saving their life.  It would not be surprising that we could see this family at one of our transplant clinics here in Winnipeg.

Tough to Watch?

An unequivocal....YES!  It was very difficult to watch but very worthwhile.  It was particularly fascinating to see a family go through the donation process.  A side of the equation that we are not familiar with but what we always speculate and wonder about.  I am very impressed by these people who chose to go through the process of donating organs.  After all, if there is something to be learned in this documentary is the life and death nature of the organ donation process and the euphoric highs and devastating lows that are involved for both donor and recipient.  A roller coaster ride of emotions that we were fortunate enough to be the beneficiary.

What was Missing?

It is clear that the producers of this program focused exclusively on the moment of donation and the moment the organ is received.  I think they did an admirable job and packed an hour long program with as much as they could.

The issue we (Susan and I) keep coming back to is that there is a compelling story leading up to the need for a transplant and then a lifetime of effects to deal with after receiving the donated organ.  All of those who fall ill and require a transplant will undoubtedly go through some very tenuous circumstance to get to that point.  The organ recipients are the sickest of the sick and endure numerous treatments and interventions prior to ever being considered and listed for the transplant.  The transplant process is completely out of their control as they have no way to determine when that "elusive" call may come with an offer of the donated organ.  The physical and emotional impacts are profound and will be felt for years to come.  In our case, our transplant saved Russell's life.  It also changed us as parents.  We are not the same people we were before.  Russell also has to live with all of the rigours that come with maintaining a transplanted organ plus he also has to live with the effects of the heroic efforts that were performed just to get him to the point where he could receive his transplanted heart.  Many of these realities he is just learning about as he is just a young boy just learning about his embattled infancy.

Yes...transplant changes people and those who care for them.  Perhaps, the subject of another documentary.

It's Official! WRHA Names New Board

Today it became official.  I've been named to the board of the Winnipeg Regional Health Authority.  Something I would never have even considered only a few short years ago.

This is a daunting challenge for someone who has only recently been hurled into the role of caregiver.  This has been an amazing education to me as I have become an advocate for patient and family centred care (PFCC).  The WRHA and health care as a whole have many complex and daunting challenges to address.  Some may say the challenges are impossible...but they aren't.

The Rise of the E-Patient

Many may consider my appointment as a bit odd.  I am not a health care professional.  I do not work in a health care facility.  What many members of the public may not realize is the growing number of patients, caregivers, and patient families who are getting more involved in their own health care and in the health care system as a whole.  For people like me who are immersed in the health care process on an almost daily basis, we provide a unique experience and perspective to the health care debate.  Patients and families are gaining a sophisticated knowledge of the health care system with the proliferation of social media, online medical resources, and most importantly through peer support. For many of us getting involved is much needed therapy.  Many people who are frequent users of the health care system are now becoming "e-patients" (engaged - empowered - equipped - educated).  For us, there is no turning back.

Nothing about us Without Us

At the infancy of the "patient and family centred care" movement there were many groups formed to try to address patient concerns.  Patients came to a point where they were no longer happy being subjected to anything the health care system would deliver to them.  We often hear of patient advisory committees.  Carefully managed groups that in some cases have become successful and in other cases not.  I would assert that the reason that some of these groups have failed is simply for the reason that they were token groups with little to no impact.  As soon as committee members would realize their concerns and feedback would have no impact they would quickly step back from non-effective committees.  Patient/family time is precious and finite.  As a volunteer, if you see no benefit you quickly become disillusioned and withdraw.  This is very common.  On the other hand, groups that were successful were given a voice with decision makers and were given opportunities to have their message heard.  These opportunities have taken many forms that may have included strategic planning, patient centred design, development of health care policy, or simply sharing your patient story.  These groups have thrived and have begun to make inroads in health care.  Smart health care managers have seen the benefit of these groups and have embraced the PFCC mantra of "nothing about us without us."  It is these health leaders who have insisted on garnering input from patient experts.  However, this kind of engagement is not widespread.

Having had some success in getting the voice of the patient voice heard, I believe we are at a crossroads.  The crossroads of patients stepping away from patient advisory committees and becoming health care leaders.   I hope my appointment is one of those steps, but I know that I am not alone.  Patients and caregivers are taking leadership roles all across our country.  This is a natural progression and a very necessary one.

Respecting the Patient Story

For myself I need to remember this is not about me and my family's journey.  It is about the many people who use our health care system and what is best for those patients and their families.  All of our experiences are unique and different. As I have gotten to know other patient advocates i am well aware that there opinions differ from mine, as their experiences differ from mine.  How can I best represent such a diverse group?  Very simply I need to respect the "patient story."  That is the most daunting task that I have.  As I take on this role,  it is incumbent on me to listen to, and learn from, the patient experience and the patient story.