...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.