Where we are at now...


2/4/05 Aged 13 years 1 month.  General check up with an ECG and X-Ray. Brad has put on an amazing 7.3kilos in the last 6 months. Not in general body fat but in nourishment throughout his organs. His health is great and he has had no further trouble with his eyes where he was having mild "black spots" for a while. This was checked out by an Ophthalmogist and we monitored any further occurences.

1/11/05 Aged 13 years 8 months. Another general check-up involving an X-Ray and ECG. Brad has put on a further 7.2 kilos. Thats 14 and a half kilos in a year, and he has grown 7.5cm. The body is certainly making up for lost time and his heart is working well!! All results are showing as "Normal". How nice it is to finally have a son who fits pretty much into the "normal" catagory where his health is concerned.

9/12/05 Another trip to Auckland , this time for an advanced MRI scan.  This was the trip I had been waiting for. A good look at what was happening to the operation site was finally going to put my mind at ease as to how well the operation had gone. The scan showed some "thickening of the wall of the aorta, presumably due to the large patch of Goretex inserted as part of the arch repair" but "no evidence of significant narrowing". Woo hooooo !!!  What a great Christmas present. We all drove home very happy.

Late Dec 05'. Brads paediatrician invited us in to see the "movies" taken of Brads MRI. It was pretty cool to see the inside action and I was given a copy to keep and view at home. I have no idea what I'm looking at lol, but can make out a few pumps and valves, and it's nice to see them all working to plan. I thought it was a really nice thing for him to do. This man will always be our number one "rock" as he has been throughout all our troubled times.

June 2006.  Brad is well into his fourth form year and is doing well. He has started playing under water hockey and for the first time in his life, he WON a silver medal !!!!! His team came second in a regional secondary school competition and Brad got "Most improved" for his team for the tournament. Just as I thought all the tears were over, I felt like having another wee cry. I never thought I'd see the day that Brad would be in a winning sports team. I think the medal meant more to me than to any other player/parent at the pool that day.  It was quite a special moment. His team continues to do well and they have recently won another local tournament. They have qualified for the National champs which will be held on August 18th. Watch this space.

7/7/06 I should have known better than to get so excited about the wonderful progress Brad had been making since his surgery. Even though his heart is always in the back of my mind, I had thought only positive thoughts with all the great results we were having. Today an appointment had been made for Brad by Tauranga Hospital at short notice with a visiting Paediatric Cardiologist from Starship Hospital. Another fantastic Doctor, as they all are. Brad had an ECG and an Echocardigram. (Heart scan). When he had finished, I sat listening to the results with a "you're bloody joking" look of disbelief on my face. Brads left side of his heart is enlarged. This time I didn't want to cry, I wanted to swear!! Not again, I just wanted to yell down the corridor, "It's not bloody fair".

Really what I'm saying is, I wanted to throw a little tanty. For some reason his heart has started pumping hard again, even though it no longer needs too so like any over worked muscle, it has enlarged. Stuff it! It is not a major problem at the moment, but I didn't want to hear anyway.  He is now at risk of developing high blood pressure and may have to be medicated. We are on a waiting list so he can be scheduled to have a 24 hour halter blood pressure moniter put on again.

I feel like it's a big step backwards and all I can say is.........*sigh*,  here we go again........

Brad going to "heart camp teenbeat" January 2006.

Brad with his silver medal for under water hockey.

Most Improved junior boy, underwater hockey.

30/08/2006 My worry was short lived thank goodness. The 24 hour BP machine returned good results and Brad’s BP was only slightly below what it should be.  They will continue to monitor his heart yearly for any change.

15/11/2006 It was a different kind of sadness I felt today as we visited Brad’s paediatrician for what was going to be our last time. Brad has “out grown” the children’s heart side and must now move on to a new specialist who specializes in Adult congenital heart defects. Although I have faith in the new Doctor, I feel extremely sad that we will no longer be under the one man who has gone over and above his duty as a Doctor and has been such a tremendous support to me during these last 13 years. He has laughed with us in the good times and I think has also felt quite emotional with us in the stressful times. Remember the name Hugh Lees. This man is a legend.!!

28/11/2007 Brad continues to do extremely well. He is over 6 foot tall now and he reminds me daily that he is now the tallest in the family. This year has been a successful year for Brad’s underwater hockey team when they won gold at the regional secondary schools champs in Auckland, and then went on to win bronze at the National champs in Christchurch. At the College sports awards held this month, Brad won the trophy for most improved junior boy in underwater hockey. I was a very proud mummy and as he was receiving his trophy, I once again reflected on how hard the road has been for him to get that far.

We are currently waiting for an appointment with the new specialist where hopefully, all going well, check-ups will be extended to around every 18 months.

17/12/2007 Because changing to a new cardiologist takes TIME we managed to squeeze in another visit with Hugh Lees.  Hugh was pleased with all of Brads results and we even got off having to wait forever for an X-Ray!!  Height 181.6cm, weight 88.65kg.

19/3/2008 Today we had our first appointment with the Adult Congenital Cardiac Clinic, and met our new cardiologist.   Height 184cm (will he ever stop growing?) weight 90kg.  In the Dr’s “results” letter, he noted the following: “Brad is at an increased likelihood of needing treatment for hypertension at a later date and needs regular check ups.  Brad will need periodic imaging of his repair site. (M.R.I) This is because of the prosthetic material used. I would not expect there to be any problems in the short to intermediate term…” … I HATE reading things that leave me wondering…. What about the LONG TERM ?????

30/5/2008 .. Back to Auckland for am MRI scan.  The scan showed “the repair is very satisfactory and I am pleased with the result”.  Excellent, I like that sort of result.

March/2009.  At today’s “check up” with the cardiologist, I heard these words for the very first time in 17 years.  “Everything is NORMAL”….what??? Normal???? 17 years, 2 major surgeries, too many procedures to count and today BRAD IS NORMAL.  How nice it was to leave the hospital with my NORMAL son……. Who feels NORMAL and looks NORMAL……………. Normal…. What a great word.

24/June/2010.  Today Brad had to have an Echocardiogram just as a routine check up. All was going well until the operator said…”whats that”………WHAT ???????? “Whats what?” I said….  She wasn’t sure, there appeared to be some “turbulence” in his aorta. At this stage we are currently now waiting for an appointment with the cardiologist to explain exactly what the “what’s that” and “turbulence” actually is. Hopefully this will be soon as comments like that I could really do without.  I will update this once we have seen the specialist which could be 2-3 months with the NZ hospital system. *groan*. In the mean time, I’m trying not to think about “what’s that” or “turbulence”, because everything has been going so well……….. I really don’t want to know.

18/August/2010.  A routine check up today. Brad was 184cm tall and 104kg. The cardiologist said he needs to exercise. The "Turbulence" is being blamed on his coarctation repair "but as the scan is only 2D, it's not that well seen".... Christ, get a better scan I say! I wasn't in a very good mood after this appointment, the cardiologist told me that as Brad is 18 now, I don't need to be there and he asked me to leave the room.  After 18 years of going through all of this, suddenly this pratt who has healthy kids and is younger than me decides that the mother should piss off?? I was pretty put out about this and will be more prepared next time when my butt will NOT be leaving the chair, and Brad is fine with this.

The cardiologist's report finished off with .. " Long term follow-up will be to monitor and changes in his aortic valve, changes in his aorta and changes at the site of the coarctation repair. If this occurs, it will be very gradual and as such will only do an MRI every 4-5 years.

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