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!

2011 was a good year !

Although our New Years resolution has not gone really well...we look back at 2011 as a very good year.  Yes...our idea of a good year is a little different than most.  Russell was admitted to hospital twice in early   2011, and he broke his arm in June.  Not exactly fun times...but we learned a lot about how strong our little boy is.  Being in hospital actually gave us a lot of confidence and understanding of his health and how to manage it.  Knowing what to avoid can make all the difference in the world.  The broken arm I can hardly remember.  It didn't slow him down at all and it seemed like such a short time that he was in the cast.  In spite of some of the challenges we had...we had so many more positives.

Nicole started school in September...a pretty big day for the little girl and she has done so awesome in school.  I was able to get a lot of work done around the house...and I am looking forward to enjoying my landscaping in the spring time.  The big change for Russell was that he is no longer a baby...in 2011 he turned into a real little boy who runs and plays and causes carnage and mayhem.  No helpless little baby anymore.  In 2011...it seemed like we moved forward.  Hospital world seems to be fading into the distance...time to get on with life.  Time to start thinking about the future.  My fondest memory of 2011 had to be Christmas.  Christmas has always seemed to be a difficult time.  In years past we had so many bad experiences around the Christmas season.  Susan's Dad was extremely sick at Christmas, and passed shortly after New Years...my Dad and Susan's Mom were diagnosed with cancer right around Christmas and of course our memorable Christmas in Edmonton.  2011 was different.  Both Nicole and Russell really got into it this year and Susan and I went along for the ride.  We didn't do anything out of the ordinary but the joy the kids brought to the Christmas Season was quite infectious.  I have to mention what a trooper Nicole was.  She was involved in a Christmas concert at school and at church.  We really didn't know what to expect because, as parents, we were never really involved in the practices.  We had no idea what to expect.  At church, Nicole, was on stage for a full hour and seemed to be totally into it...she knew her lines and knew her songs...very impressive for a 5 year old.  She did awesome!

2011 had a very shaky start but turned out to be a great year.  2012 has started out a little bumpy...hope it turns around just like it did last year.

New Years Resolutions

Can you change your New Years resolution...or do you have to wait for next year?

I've never been much for New Years resolutions but I don't think setting goals and trying to improve yourself are bad things.  Susan and I had only one real goal for 2012.  We wanted to go the whole year without landing in the Emergency Room.  2011 was pretty good...only 3 trips to the ER.  If we could avoid the ER that would be fantastic.

So, how long did we last?  A whole 12 days.  Wahoo!

At 5:30 PM on January 12 I got the phone call.  "Hello....Hello...Uhm before I say anything I'm allright."  When a phone conversation starts that way you start jumping to conclusions and the words that "you're allright" are not all that comforting.  The only think it tells me is that you're not unconscious.  This is the call I got from Susan.  She had been in a car accident heading home from work.  She was pretty confident she broke something in her foot.  Off to the emergency room.  Yay!

The interesting part is that we got to go to the Seven Oaks Emergency room.  A new experience.  I thought I should starting writing reviews of the hospitals of Western Canada.

To make a long story short and after spending the better part of two days in the emergency room (yes...we had to come back the next day because they couldn't get enough of our sunshiney personality) we discovered Susan had done a pretty good number on her foot.  She would have surgery on it a week later and thus began our next adventure.

So there went our New Years resolution up in smoke after a whole 12 days.  So...I wondered if I could change New Years Resolutions...what I wanted to do a few more posts on here.  I always felt this was a good way to purge.  I don't really care if anyone reads this blog...I do this for me.  Its a great way to vent frustration.  You may think that it has been pretty quiet at our place lately and that's why I haven't posted anything.  That couldn't be further from the truth...there has been lots going on.  Hopefully...I can be a little more disciplined and post a little more often.  It has been very busy the last 3 or 4 months and our calendar is rapidly filling up for the spring.

Hang on...its going to be a bumpy ride.