...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.

A Flare for the Dramatic

Some on Facebook may have wondered about a "tongue and cheek" post I made yesterday about 911 service.  Thought that required a little explaining.
For the past two weeks Susan has felt...to be blunt awful.  She has had issues with being short of breath.  Any exertion at all and she would be extremely winded.  The immediate concern is that this is something cardiac related.  We have been pestering the Heart Failure Clinic at St Boniface Hospital and were able to do a an ultrasound of her heart last week and a follow-up with one of her cardiologists on Thursday. 

This has lead to some good news and bad news.  As far as her cardiac function is concerned; everyone was pleasantly surprised at how well her ticker is doing.  The pressure gradient in her heart is as low as it has been since her surgery  years ago.  That is fantastic news.  The bad news is...why the shortness of breath?  More tests are scheduled over the next few weeks as she is still not in very good shape.

The issue that came up yesterday...was a bit bizarre.  Susan was home alone...kids were at school and I was at work.  She had been doing a few things in the kitchen and of course felt short of breath.  Typically she would rest until she went back to normal.  The problem was that she didn't recover.  Being alone and being presented with different symptoms was disconcerting to say the least.  We think the anxiety of not knowing what was going on how what to do about it probably made things a lot worse.  Susan did the right thing and called 911.  She was taken to hospital in Selkirk and we spent 8 forgettable hours in the Selkirk General Hospital.  I'm not going to say anything negative about her stay there.  They made their best efforts but they just don't have the expertise that specialists would have.  We were treated well but they were a little outgunned.  In reality, her specialists right now are scratching their heads about what is going on...its unrealistic to expect an ER doctor in a small town to be able to deal with someone has complex as Susan.

We got home last night.  Thing are under control and we are just being careful.  The next few weeks will hopefully provide some insight into what is going on.

The Summer of our Discontent

A bit of a negative title to this post, but in the grand scheme of things "discontent" is a lot better than horrible or catastrophic.  In reality, we can't complain; no trips to emergency, bloodwork for Russell has been on a two to three week schedule, and only a couple of Doctor appointments.  Considering our track record that's not all bad.

Russell is still wrestling with all of his issues, eating, growing, managing his anemia...these are all still issues; but I think we are making slow and steady progress.  The biggest issue we seem to have with him has mostly to do with him being a very active 4 year old.  The same as every other 4 year old.  He gives his poor mother no end of stress.  This is the same mother who is still feeling significant effects of a broken foot.  Very tough for her to chase him with a significant hobble. 

Nicole seems to have mixed feelings about starting Grade 1.  One day it seems that she can't wait to get back to school and other days indicates the thought of going to school every day may be just too much.  As is usually the case with Nicole she will rise to the occasion.  I'm very confident of that. 

For the most part it has been a very nice summer at the Lepp house.  The kids have been outside lots and have really enjoyed splashing around in the pool.  July was just about perfect weather for that.  We have several friends who are battling with their own health issues and as thankful as we are that we are doing well, for the time being, it is hard to watch others go through things that we are all too familiar with.  Today we know of two little ones who are looking at the real possibility of being listed for a heart transplant.  I now know how frustrating it is for us to follow someone else's story.  When we were posting on our care page and providing almost daily posts on how Russell (and Susan) were doing we had no idea what the effect was on those who read it.  We are beginning to gain an understanding of that now.  The other lesson we have learned is that as similar as these stories are to our own...in many ways they are different as these little kids forge their own path.  We are fearful that the outcome may not be what everyone hopes and prays for.

September is fast approaching (like it or not) and with all of the Fall activities starting up again...our Doctor appointments start up as well.  We just had an appointment with Endocrinology (which went well) and in early September we will be seeing the rest of the "ologys."  We are conducting an experiment. We are going to see Cardiology, Nephrology, and Opthamology all on the same morning.  That should be interesting.  It sounds crazy, but if you can get those all done in one morning and save two other trips to the hospital...that would be awesome.



Stay tuned.

Busy Busy

Life still continues to be busy in the Lepp household.  Since Russell was in hospital at the end of March, we all took our turns battling a cold that just didn't want to give up.  I've never had a cold that bad, I can imagine how difficult it was for Russell with a compromised immune system.

The end of April marked Nicole's 6th birthday (April 27th to be specific).  This was her first birthday party with her school friends.  What a gong show it was.  16 screaming little girls...yikes.  The nice part about it was that kids at this age are not so clicky and everyone gets along.  Don't imagine that is going to last long...so we enjoy it while we can.  I think Nicole must have mentioned to all of her friends that she wanted "Barbie" stuff for her birthday...because she was inundated with every Barbie trinket known to man.  Again...yikes.  We survived that day and it was relatively painless.  Most importantly I think Nicole had a great time.

Susan is going to physio two times a week now to help get her back to speed.  Our big concern is that their may be some permanent injury and to what extent.  The way the foot has been repaired surgically with screws etc.  She will not have the flexibility or movement she had before, we are just wondering what the extent will be.  Susan is back at work now, but it is a challenge as she still needs to use the crutches a bit and has to wear her boot to protect the foot.  The one nice thing is that we are now driving to work together, which I have enjoyed.  Not sure why we didn't do this before.



Susan's Foot!



A few interesting developments have come out of Susan's accident and breaking her foot.  She was treated by the Seven Oaks Emergency room after her car accident.  We had some unfortunate incidents happen while being treated (or not being treated) there.  A couple of weeks after the "incident."  I thought it was important to send a letter to the hospital, and share our experiences and concerns we had about Susan's treatment.  Apparently my e-mail made quite an impression.  I was contacted by the Chief Medical Officer at Seven Oaks and given a very well thought out response from the hospital.  I was asked if my letter could be forwarded to other staff members as they thought the feedback could be beneficial.  I thought the matter would end there, but I was contacted again by the hospital about a month ago and was invited to participate in a process improvement project.  I was being asked to specifically provide a patient perspective to assist in improving processes in the Seven Oaks Emergency Room.  I spent an entire day with a group of about 12 Emergency Room Staff, and will be invited back again in June to participate again. 

It is absolutely fascinating to get involved in health care management at this level.  It was a huge education and eye-opener.  In other ways it is extremely frustrating to see first-hand why health care fails on so many levels.  It also frustrates me that the current debate on health care that takes place at the political level is mostly irrelevant and a waste of time.  In my day at Seven Oaks I saw a frustrated staff that has to attempt to solve real issues in their department under a burden of political agendas from various parties including the media, management, unions, and government.  These people just want to take care of people and send them home...safely.  It is just that simple.

In my own experience and when I have talked to other families about how hospital staff have made a huge difference in their lives it always seems to come down to someone who cared enough to go above and beyond what is in their "job description" and just did the "right" thing.  In other words...they cared enough to identify a problem and they took care of it.  I really hope that the team at Seven Oaks is on the right path...Good Luck!

Father and Son camping trip.

Got to go on a sleepover with Russell over the weekend.  We left just after lunch on Friday and got back home on Sunday night.  I must admit our accommodations were less than ideal and Russell was not in the best of humour.

The Winnipeg Children's hospital is not the best location for a sleepover and they keep sticking sharp objects into my son (get the point?).  Fortunately, they found no big issues with Russell.  He was just dehydrated from the cold he has been battling.  We were discharged Sunday after lunch and proceeded on our way home.  Russell is not feeling 100% as he still has his cold.  They aren't going to keep him in hospital with just a cold.  They ran every test on him known to man to ensure there was no other issue; then kicked us out.  It was a true father and son trip though as Susan who is still fairly incapacitated with her broken foot and also has a pretty nasty cold.  She came with us to Emergency but then stayed home. 

So it has been 13 months since Russell was last admitted to hospital.  I suppose thats OK.  In some ways it was a good learning experience.  We learned how resilient the little boy is.  All of the tests showed that he is actually doing fairly well, in spite of his cold.  His kidneys reacted as they should and his immune system is doing what it is supposed to.  Unfortunate that we had to be incarcerated for the weekend to learn this.  The boy just needs to keep drinking and stay hydrated. 

I get a little "short" with the staff at the hospital as I have very little patience (lack of sleep doesn't help).  I need to learn patience.  However, we are treated very well there and they are only looking out for Russell, and being careful.  Most of the staff there are great to work with and are good at what they do.  Do issues come up?  Yes...most definitely but fortunately these are infrequent occurences.  My biggest frustration is the lack of communication.  It seems to be a recurring theme.  Most of the frustration occurs when various specialties and departments do not communicate.  I'm not talking rocket science here.  Some of the information I provide becomes very critical when communication breaks down.  So these trips tend to be mentally taxing because you do have to pay attention and speak up at appropriate times or "bad" things will happen.

I just wonder why we can't do anything normal.  Looking forward to a real Father and Son Camping trip.

One small step for a little boy!

With the weather getting nicer...we tend to start thinking about spring-like activities.  The last couple of years we have been looking forward to Nicole's Soccer season.  This year we have a bit of a wrinkle.  As hard is it is to believe...Russell is old enough to play soccer this spring.  It seems just a little unreal that he is old enough; as he is still just a little guy.

We did it...we took the plunge and signed him up for soccer.  I suppose it isn't a big deal...3 year olds everywhere are signing up for soccer, it should be no different for him.  Then we think about where he was 3 years ago and it then becomes a big deal.  What a three years it has been.  It seems so surreal to be thinking about him playing soccer given everything he has been through.

I have no idea if Russell will enjoy soccer or what he will do.  I guarantee it will be entertaining.  I think the big question is how Mom and Dad will handle this.  Get out your Kleenex.  I am sure we'll get lots of funny looks and people will be wondering what is wrong with us.  I guess it won't be what is wrong but what is right!  These moments make everything worth while.  Stay tuned for the date of the first game and pictures to follow!