Friday, December 21, 2012

The meds are working, Praise the Lord!!

We knew this day was coming for several weeks now but it didn't make it any easier to endure.  This was the day we took all 5 kids into the children's heart center for testing.  AJ needed to be retested to see if his meds were working and the rest of the kids needed to be tested to see if they also carry the same heart condition AJ does.  When we arrived at just after 12:45pm, the kids all removed their coats and boots and were immediately weighed.  Then the 2 little girls came with me while they had their ECG.  They have never had any testing like this done so they were mighty apprehensive.  Telling them they were just going to have stickers all over their tummy didn't seem to help but once Ali had her test done, Ari was quick to follow.  After all, she watched Ali and saw she did fine so it was okay for her as well.  While the little girls were having their ECGs, the older 3 were off with Jay for echo cardiograms (ultrasounds of their hearts).  They were great for their tests.  After all, all you do is lie on your side and have some goop smooshed on your chest.  She rubs a wand all over your heart area and you can watch and listen to your heart - quite fascinating, really.  When they were done, it was time for AJ to have his stress test.  Since he has done this before, it was simple, really.  Lie down, hook up all the wire, run on the treadmill, endure the speed and incline changes for 11 minutes and you are done!  Well, we were thrilled to see that he was able to go for twice as long on the treadmill before his heart started showing dangerous and abnormal heart rhythms.  That means his beta-blocker medication is working and we are so thankful for that!  Praise Jesus!  Once he was done, it was Pepe's turn.  He was not so excited.  Stoic.  Serious.  No fun.  Just get it over with.  He ran.  He stopped at just shy of 7 minutes, complaining his legs hurt.  I was a bit disappointed in him quitting but they were able to get the results they needed.  Perfectly normal!  Thank you, Lord!  Then it was RJ's turn.  She was looking forward to this for so long.  She was sooo excited about running on the treadmill.  So, they hooked her up and eventually, after a very long wait, she was able to hop on the treadmill.  She only lasted just over 7 minutes before she asked to stop but the technician said it is hard for little kids (RJ is 6) to run coordinated on an inclined treadmill.  But she did enough to get normal test results so we are super thrilled about that, too!   While the older 3 were on the treadmill, the younger 2 were off for their echo cardiograms.  But Ali did not like it one little bit.  Jay had to lie down right behind her on the bed so the test could be done.  It was but she wasn't happy about it.  Ari was much better, a little more adventurous than Ali.  Then, after everyone was tested, AJ was hooked up to the holter monitor, which is a portable ECG that monitors him for the next 24 hours.  He has a bunch of wires stuck to him with lots of tape holding it all in place so it is rather uncomfortable but he is a trooper.  I promised Lego when he is done!  :)  Then we sat for what seemed like forever to hear all the results.  It was tiring watching one staff member after another leaving at the end of the day and we were still there.  Finally, it was just our family and our doctor left.  And then he told us all the good news.  AJ's meds are working.  Pepe and RJ have normal test results.  Ari and Ali, though, because they are too young for the treadmill, will have to have a holter monitor test at some time in the future to rule out any heart condition.  But their tests were also normal (which, incidentally, doesn't mean much since AJ also has normal ECG results and a normal echo cardiogram.  That is why the holter and/or stress test is so important.).  So, that was all good.  Now on to the next steps.  Jay and I must be tested.  We need to go to our family doctor and explain what is happening with AJ and request testing for ourselves.  AJ will fly to another province to have an MRI of his heart in the new year.  This is another test the doctor is expecting to have normal results.  That is the funny thing about this rare heart condition, called CPVT.  Most resting results are normal.  The heart muscle itself is also normal.  It is just an inability of the heart's electrical system to handle adrenaline so it runs into problems with exercise or emotionally-induced stress.  Once the MRI is completed, AJ will go for genetics testing to see if they can identify the gene causing the CPVT.  In 40%-60% of the cases, they cannot identify the gene but they can some of the time.  If they can, then we know for certain he has CPVT and the rest of the family can also be tested so we would know with certainty who has it and who doesn't.  If the gene cannot be identified, a couple of other invasive tests can be performed to solidify a diagnosis of CPVT.  Since those tests are not mandatory and since they are full of risks, we are inclined to not do them.  It is not that important to us that we have a certain 100% diagnosis of CPVT if it means AJ's life is at risk.  We know that the meds are working and we trust the doctor.  He is one of only 9 specialists in the country and the only one in our province that knows and understands this relatively new and rare condition.  With all the research we have done (which isn't hard to do since there is not that much written about it - remember, new and rare) we know that this is what AJ has.  It fits every description to a tee.  So, for now the AED stays with us until the medication controls it perfectly or until they implant an internal defibrillator.  Whatever the case, we are thankful for today's results and were so glad to leave the clinic 4 1/2 long hours after we arrived.

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