Brads story continued (4)

Brad was now 6 years old and was in good health.  The thought of having to go through all this again was devastating. We tried to remain positive as we continued our journey.    

17/06/98. Back up to Greenlane Hospital for an echocardiogram. (Heart scan). The scan showed that there was still some narrowing of the aorta, but could possibly be stretched with a balloon dilation in the future.  The cardiologist said they would wait for four years before another check-up with them was required. We felt good about this as asumed there was not too much to worry about. Back to yearly visits with Dr Lees.

20/12/01. Another echocardiogram at Greenlane. The following letter from the cardiologist included terms like: "Repair would not be simple", and " quite extensive surgery" etc. We awaited the powers that be, to discuss Brad's case at their meeting in the new year.  It was not a "merry xmas" for us that year.

16/01/02. The news arrived by letter that Brads heart muscle has become considerably more thickened over the last two and a half years and his aortic arch has not grown at all over that period.  Here is a quote from the letter: "To fix this narrowing would require fairly major surgery, going in from the front of the chest and requiring cardiopulmonary bypass to complete it, so the decision to go ahead would not be taken lightly.  Nevertheless the long term consequences of high BP and thickening of the heart muscle are not attractive either".  WOW, so do we get a choice??? Both options were unpleasent.  A cardiac catheter test was to be booked.

26/03/02. Back to Greenlane. The car knows it's way by itself now.  Brad is given a blood pressure moniter to wear for 24 hours. This reads his BP every 15 minutes, just like a normal BP machine BUT....... Brad and I got to share a room at "heart house" a house owned by Heart Children NZ, for the use of parents with kids on the ward.  The monitor pumped up, hissed, beeped and ticked away ALL NIGHT. lol. We can laugh about it now but sleep was not an option for either of us that night.

28/03/02. Brad had a cardiac catheterization. He was pretty nervous, as he is now 10 and understands pain, fear etc. He did not recover very well from the procedure where a camera is inserted through an artery in the groin and goes up for a look at the "inside".  He bled quite badly afterward and had to have weights on his groin to stop the bleed. Once again he vomited from the anesthetic.  He was in a bit of pain from this for about 10 days and the bruise was amazing!!

The results of the cardiac catheterization were not good.   Before Brad went into surgery the cardiologist told me they would try and stretch the aorta with a balloon (angioplasty) to make it bigger.  If that didn’t work, they would place a stent (a small metal tube) that could be expanded every two years to keep up with his growth.  This is not an un-common procedure and the cardiologist was very positive.  I phoned everyone with the exciting news, no more major surgery, how fantastic!! Just a cardiac catherterisation every couple of years until he was an adult size.  Everyone was so pleased and I awaited Brads return from surgery with a smile on my face.

Boy was that whipped off with a slap. Brad was very late back from surgery and I was starting to worry. (I’m pretty good at that now).  The cardiologist sat me down and said the balloon didn’t work and his aorta was so tight with scar tissue they could not insert the stent. That was our last hope, and there was nothing more they could do.  He told me Brad would probably go into heart failure in the next year or so and would probably not live much past 15 years of age.  How do you cope with that news? I had to ring everyone back home (who were still smiling from my great news earlier on) and tell them this devastating news. I doubt many understood a word I said, I was in such a state. I couldn’t even face Brad, Thank god he was so groggy, I could pop in and out briefly as I couldn’t hold back the tears. This was the worst day of my life and even now, as I update this page 6 years later, it brings a tear to my eye.  How would I ever survive, without Brad.

We drove home the next day, I told Brad he might need surgery later on and we never mentioned to Brad what the outcome was until two years later after a successful surgery.

The next two and a half years were terrible. Brad would talk about what he was going to do at University or other things later in life and every time, I had to leave the room.  I probably wasn’t very tolerant to a few people, I felt like I was grieving for my son while he still lived.  During this time, another local heart child who we had a bit to do with lost his battle and the thought that we were going to have to go through what his parents were going through upset me so much.  It was just……….HORRIBLE

26/11/03. We got to go to Auckland Hospital this time, nice to have a change of scenery!!  The MRI scan. What a great machine. Pretty scary as only a small opening to go through and Brad felt more comfortable wearing a type of blindfold as it was very claustrophobic and noisy.  The machine reads EVERYTHING. I sat behind Brad, trying to think only "nice" thoughts incase it read my mind. lol. All was going Ok until they decided that some type of fluid had to be put through Brads veins.  unfortunately the only way for this is via the dreaded needles. Not very pleasant for Brad..... again.

I think we have now officially had every test and procedure available for a heart child.

<< Back home << Previous Cont...>>