My Life is a Reality TV Show

It was another fun-filled week of adventures this week.  My last post gave a brief rundown on what a typical week is like for us.  It's busy, but many people are busy.  Everyone is busy nowadays.  Our normal routine is just a little different than most in that our lives are just a little preoccupied on all matters health related.

We have a lot going on right now.  Susan is pretty much stuck at home waiting for surgery and Susan's Mom has just had major abdominal surgery and was just released from hospital this week.  We have a very full plate.

If that wasn't enough, we had a little medical detour this week.

At 5:00 AM on Wednesday, Russell woke us up as he was in significant pain.  The abdominal pain that he had encountered a week earlier was back.  He was in a lot of pain and was clutching his gut.  Tylenol and a little bit of time solved the problem the week before.  We gave him some Tylenol and tried to get him back to bed to rest.  Given that the pain had returned we figured a call to the pediatrician was in order.  Later in the morning, we were able to reach our pediatrician by phone and Susan had a quick discussion.  Because of the pain in the abdomen Russell's breathing was very shallow.  Recommendation from the Dr was to see if the Tylenol and a little rest would help.  If after a couple of hours the pain was still persisting....it would be a good idea to head to the ER and at least get a chest x-ray.

Late in the morning we decided to head to the ER.  I met Susan and Russell at Children's ER at about 12:30.  On the way, we ran into two of our cardiologists, and we also said a brief hello to the ER Patient Care Manager.  Yes, we are on a first name basis.  As we never wait in the waiting room, we quickly made our way to Treatment Room 11, and got ourselves settled.  With cell phones in hand, we notified our nurse clinician and our transplant cardiologist that we had arrived at the ER and gave them a brief rundown on the situation.  We had a response from both of them within 15 mins.  So, with our backup in place, we proceeded to concentrate on making Russell comfortable.  He wasn't in bad shape but he was still in discomfort.  He was mostly agitated about where he was.  He knows the ER far to well.  We had a quick visit from our nurse...did a blood pressure...she got us a pillow and she was gone.

I must apologize and maybe i'm a health care snob but I'm not a big fan of working with the "B" team.  Our next visitor was a pleasant young man who identified himself as a med student.  Yay, we get to educate Skippy on transplant cardiology.  I suspect that attending physicians send med students or inexperienced residents to see people like this us as a hazing ritual disguised as a "learning experience."  Skippy obviously came into our room a little unprepared and obviously hadn't read Russell's chart.  Keep in mind that when we present at Triage, the first thing was say is "This is Russell Lepp and he is 7 years post cardiac transplant."  On this day...this was written by the triage nurse at the top of the chart...IN BIG BOLD LETTERS.  Unfortunately, for Skippy he didn't get the memo.  He proceeded to ask us all the typical questions.  It was becoming obvious to Susan and I that from the questions he had no idea about the patient's history.  We just looked at each other with the collective eye roll.  This went on for about 10 mins and then he asked about his medical history.  "Had he had surgery?"  This is when we started to laugh.  I know it probably isn't the most constructive response but it is the kind of thing that happens to us fairly often.

Once we got Skippy organized, we got the process started again.  As Russell was a bit congested, and because of the shallow breathing we were sent for a chest X-ray.  Skippy was very helpful and showed us the way.  We had to explain that we have been there a few times and knew the way.  In fact Russell, could conduct tours of Health Sciences Centre.

Chest X-ray was done quickly and we headed back to Treatment Room 11.  A few minutes later our attending physician rolled in with his initial assessment and who had had a peek at the chest x-ray.  The chest x-ray indicated no pneumonia and likely just a bit of a cold.  No surprise.  He told us that he would have the radiologist have a look at the x-ray to get their opinion.  He was concerned that this issue had re-occurred and it seemed like our trip to the ER would end with no resolution...our Dr indicated that he wanted to pursue the matter and not let it go.  Russell was still a bit sore but it was obvious that he was steadily getting a bit better.  The ER Doc wanted to run blood work.  We suggested that we could run his order when we went for our regular blood work which was due.  Russell's regular blood work has to be run at 8:00 am.  We got an order set from the ER Dr and we agreed we were going to come back in the morning and run the blood work.  We needed to ensure that the results of the blood tests would go to both Doctors, so we had a little bit of coordinating there.  This was solved by a quick text message from our ER Doc to our transplant Doc.  We left the ER at 2:30.  We were there a grand total of 2 hours.  Probably one of our quickest trips to the ER.

Later in the afternoon, we received an email from our transplant cardiologist stating that she had talked to the ER Doc, and that she had been briefed on the entire ER visit.  She stated that if the blood work showed nothing unusual, that she would order an ultrasound for Russell, to be done as an outpatient test.  Even though we had left the ER, care was still happening.

I share this experience because I wanted to have people understand how much coordination has to happen even for the simplest of things.  The reason this episode was well orchestrated was because we were dealing with three cooperative Docs.  Our Pediatrician, ER Doc, and our Cardiologist.  Many times you hear about silos in health care.  That the right hand doesn't know what the left hand is doing.  This is all true.  What made this trip more coordinated.  The consistent player in this short trip to he ER, was us as the parents.  We were able to transfer info from one silo to the next.  Our pediatrician gave us info and some questions to ask when we arrived at the ER.  We eliminated having to poke Russell twice by waiting until the following morning when we could run Russell's standard tests.  When we conveyed to the ER Doc that our cardiologist was aware of what was going on and that we were in Emerg, that changes our conversation.  He knew that he was not obliged to treat anything, he knew that he could hand us off to cardiology where they could spend more time and do a proper investigation.  During this whole process we were keeping all parties informed as to what was going on and in turn we had a much better experience because we knew what was going on at all times.  We were never left guessing.

Many times the coordination that I refer to above happens without the family being aware.  The family is left guessing and making assumptions.  That is not a good feeling.  Many times we, as families, are assuming this coordination is going on and many times it is not.  The silos don't communicate well and messages routinely get missed.  We have seen this more times than I want to remember.  It is not only the job of health care professionals to engage patients and families like this but it is also incumbent on the families to interject and ask questions.  The problem is the vast majority of the population has no idea how to do this.  After 8 years we are still learning.  This is a constant challenge.  Patients/caregivers need to be educated; and they need to be involved.  It is the only way I see anything improving in health care.  The problem is that there is very little training and supports for families to become effective advocates.  Most of the learning is done at a bedside and mostly by trial and error.

A Note about Skippy:

I refer to our med student in this story by the name of "Skippy" and I'm not very nice to him.  HSC is a learning hospital and med students are all over the hospital.  I hope that this young med student becomes an excellent physician someday.  To get where he is today I have no doubt he is a smart guy, probably a lot smarter than me.  In our years of experience and having gotten to know many Doctors at a more personal level.  I am struck at how human they are.  We (general public) get some strange ideas of what Doctors should be.  Some kind of caped super hero.  We have to realize that at one point they were all struggling med students just like this young man we encountered.  I hope we weren't too rude in our encounter but in reality all Doctors will deal with some challenging families.  I hope some lessons were learned on Wednesday and if I was a little obnoxious or a little overly sarcastic...my apologies.