Aron Mastoi

My twin boys Aron and Zak was born born on the 25th of July 2007 at 32 weeks gestation. Doctors found a heart murmur with Aron, but luckily Zak didn’t. Because of Aron’s murmur, we had regular checkups with the paediatrician at the Mercy.

Most heart close within the first year but during our checkups, doctors could still hear a heart murmur, so we were referred to the RCH Melbourne for a cardiology appointment. As you can imagine it was very nerve wrecking. After almost a year we had our appointment and was told that Yes, Aron did have a hole in the heart (ASD – Atrial Septal Defect) and that it would most likely need to be closed at a later date. We were told to wait another year to see if it would close by itself but unfortunately it did not.

After our second cardiology appointment (a year after the first appointment) it was decided by the surgeon to put Aron on the waiting list for surgery. At this point I was crying, as I had hoped it would have closed by itself. We were told at the cardiology appointment that the surgery would probably be within 6 months, however due to lack of hospital beds and Aron not showing any physical compromise, his surgery was put back.

As Aron got older (3years of age +) , he started to show signs of compromise (blue lips when having a shower or a bath, regular colds, flu, tonsillitis, constantly running out of breath, falling asleep all the time, general tiredness when compared to his twin brother Zak and finally being diagnosed with pneumonia. As Aron had needed antibiotics for most illnesses, he was constantly on antibiotics and was missing a lot of childcare, which was not good for his social development. After his diagnosis of pneumonia (and calling his surgeon) Aron was put higher on the waiting list.

Aron MastoiAfter a couple of months we were given a date (yay!). On the day of pre-admission (blood tests, ECG etc) Aron came down with a high grade fever (40 degrees), so the surgeon decided it would be best to postpone the procedure. A couple of weeks later when I informed the surgeon Aron was better, we received another date (yay! Again…). Although extremely excited (about the surgery) and anxious (that he could get sick again) we soldiered on. The date came and we were on our way to the hospital for the procedure and Aron came down with Asthma. After  some further discussions with the surgeon it was postponed yet again, and under instructions of his surgeon, we cancelled childcare as well, to avoid contact with other kids to reduce the risk of him getting sick again. Once Aron was well again I notified the surgeon and was told they would try their absolute hardest to get him in as soon as possible.  A couple of months later we had another date. The day finally came and Aron was in top health. We had to be in the hospital at 7am for a few little tests. Come 8.30am we were in the operating room reception area with Aron in his gown waiting for the surgeon and his team. It was a very nervous wait. I must admit I had thoughts of running away with Aron as fast as I could so they couldn’t take him into the “Cath Lab” (Catheterisation Laboratory) where I wouldn’t be able to be with him. His name was finally called (I remember watching the “Today” show and the weather was on (a top temp of 28 today). My heart started pounding and I was trying so very hard to fight back the tears so Aron couldn’t see how scared and emotional I was.  As per Aron’s request, Daddy went into the Cath Lab with  him and I stayed out watching the “Today” show with tears streaming down my face. It was then that I was comforted by a volunteer named Jenny who helped me calm down, stay strong and think positively (as that was what Aron needed).  My husband then came out of the room and we walked slowly to the operating room parents waiting room. A room that was so close to the Cath Lab but in the same instance was thousands of miles away from my baby. At one stage I could not take much more sitting in the room so we decided to go to get some breakfast (this helped me stop crying, as I didn’t want other people watching me wipe tears). Thinking that I could control my tears we decided to walk back to the parents waiting room. It was funny because once I got to a certain point of the operating theatre hallway I started crying again.

After 1.5 hours (to me it felt like a year) I received a phone call. Answering it, it was Aron’s surgeon. Before I could even say “hello” I was in tears. So scared about what he was going to say.  Thankfully it was all positive news, that all went well and he would be out shortly to tell us more about it. Well, it was the longest 1/2 hour of my life waiting for the surgeon. I saw the surgeon walk into the waiting room and I smiled (along with tears) and he called us into an interview room where he told us that Aron did extremely well and the hole was actually smaller than what they initially thought :)

We were eventually called into the recovery room where the nurses were holding Aron’s wound site as he had woken up suddenly and had coughed and the blood clot had opened. After a while, the nurses and doctor decided to medicate him to calm him down (as he had woken up way too quickly from his anaesthetic).

When Aron started to come around and responding to us, he was transferred to the short stay ward. Aron was still heavily medicated and was sleeping on and off for most of the day and evening. Unfortunately the TV didn’t work and the heart rate monitor alarm on Aron kept going off saying that his heart rate was non detectable. Being a nurse, I quickly jumped up out of my chair checking if he was still breathing etc. I was somewhat disappointed with some of the nursing staff as they did not come and see what was going on / check why the alarm had been repeatedly going off. Little did the allocated nurse for Aron know that I was actually a nurse and that I could hear her entire handover to the afternoon nurse stating that I was an over nervous and panicky mother………. hmmmm….. my child just had a cath lab procedure…… what do they expect……. Although we were really grateful for all their efforts, the comments were a little hurting as to us, this had been a life and death situation for us and we would have really appreciated a little compassion from someone working in such circumstances.

Anyway, Aron  was very unsettled overnight waking up almost every 2 hours making sure I was there and that he would be going home in the morning. After reassuring him he would go back to sleep cuddling his HeartKids teddy tightly.

Upon waking he had small amounts of food for breakfast and was able to walk slowly to the toilet and to his chair. After watching a little bit of Cars – the movie, our name was called for us to go down to have an ultrasound to make sure the device had not moved, for an ECG and X-Ray to make sure everything was good. The results: All good. Time to call my husband to come pick us up so we could go home!

Once we returned to the ward we were quickly spoken to by the doctors (medication instructions and post catheter care) and were able to go home. This was so exciting.

We got home, had a small piece of toast with vegemite, then sat on the couch and watched movies. Just watching Aron it was amazing to see how much energy he had gained in just one day. For several nights he slept with us as we just wanted him close to us.

The day came for us to remove the pressure bandage. After an hour sitting in the bath we slowly took it off and covered his wound with a bandaid. The greatest news of all – no blue lips!

That was October 2011. It is now February 2012 and we have had a couple of check-ups (surgeon happy with progress) and don’t have to see him again for 5 months. Aron has so much energy, and is able to keep up with his twin brother Zak. He has only been sick twice since his procedure and is looking forward to going to 4 year old kinder. Everyday we think how lucky we are to have Aron today and thank God daily for blessing us with 3 beautiful healthy boys.