As the years passed and Harrison grew into a 5ft 8 high school freshman, we knew that with additional monitoring the time to replace the valve was upon us. His wonderful cardiologist decided she would run extra tests before sending him to Children's Hospital for surgery. After two traumatic visits for MRI's and CT scans, it was discovered that the Truncus definitely needed to be replaced. They also found that aorta was bulging and the aortic root was compromised so they needed to pull in some specialists and make a plan. The round table consisted of cardiologists, surgeons from Children's and an aorta specialist from St Joseph's hospital. After looking at the complexity of the issue, Dr Chen from St Joseph's insisted on over-seeing Harrison's journey.
Little did we know the journey we would be embarking on. From Day One, Dr. Chen showed empathy, quiet confidence and determination that he would take good care of our boy. Harrison left the consultation very upbeat and confident that Dr. Chen was the right man. The days leading up to surgery passed at such a pace and, before we knew it, we were awake at 3:30 am on Friday, January 29th heading to St Joseph's Hospital.
Fri January 29, 2016, Harrison's fears and anxieties were very real as we said our goodbyes at the elevator door leading to the OR. With tears rolling down his cheeks, he told us he loved us.
Harrison was not aware of the next part of the journey. Mum and Dad had to endure waiting for what was supposed to be a 6-hour surgery. When hours 8,9,10 and 11 rolled by, our greatest fears were in the forefront of our minds.
Finally on the 12th hour, the OR nurse spoke to us and informed us that surgery and repairs were complete.
They could not, however, restart Harrison's heart. It wasn't strong enough and given his faint heartbeat, they put him on an ECMO machine to support both his heart and lungs. This allowed both of these vital organs to rest. The doctors could not close his chest because the bleeding was not under control. Harrison came up to the ICU and we were shocked to see his condition. We had to hold onto our faith and believe all would be well. 3 hours later, they were rushing Harri back to the OR due to excessive bleeding and the need to do a heart bypass. 4 hours passed and Harrison returned to the ICU. This time he was on dialysis as his kidneys had completely shut down.
We visited Harrison again only to see he had grown three times his size due to fluid retention. Things did not look good. Dr. Chen spent hours watching and waiting. Harrison held on by a thread. 8 hours later with lungs not functioning, kidneys not working, blood not clotting, and continuing to bleed, Dr. Chen decided to throw the kitchen sink at it and go back to the OR. Despair lingered around as another 4 hours passed. Harrison finally came back to the ICU and Dr. Chen had stopped the bleeding.
The journey from here was a "wait and see game" and each day felt like two steps forward and one step back.
For the next two days, Harrison's heart began to grow stronger so Dr. Chen decided to take him back to the OR and remove the heart side of the ECMO machine and to try and close his chest. Having been on the ECMO for five days, the doctors were starting to be concerned for the risk of stroke, as Harrison was not responding to commands.
Anticipation and excitement filled the waiting room as the hours ticked by...the third, fourth and fifth hours passed with no word. Fear, anxiety, worry and crazy thoughts started to creep into our minds. At the 6th hour, the OR nurse appeared and reported that the ECMO had been removed from the heart. They still however could not close his chest as his body started to crashed under the pressure of the swelling around his organs when his chest was closed. Harri returned once again to the ICU to rest and heal.
Slowly but surely, Harrison began to heal and started to look like himself. Responses to commands were slow to come and his right side was definitely the strongest, but joy after this surgery was seen when his mum whispered the words “I love you” and a tear trickled down Harrison's cheek. Despite the ventilation tube down his throat, Harri tried to mouth "I love you". Harrison was "in there" and would come out when he was ready.
There were small victories over the next days with hands squeezed, feet moving and his head nodding. We felt as if he had climbed a huge mountain. His lungs were not healing as fast as Dr. Chen had hoped so they called in the pulmonary team to do a scope procedure and look at his lungs. The diagnosis was that Harri's right lung was inflated but his left lung was battered and bruised and would take time to heal. They drained as much fluids as possible and decided the lung ECMO needed to stay to support his lungs.
"Waiting" and "healing" are the words we told Harrison. Mum and dad took turns lying on the waiting room floor so they could be close at hand should Harrison need them...or if something should happen. The waiting was grueling and still is.
7 days and 26 surgical hours later the decision was made to attempt to close Harri's chest again. This time they decided not to move Harrison to the OR, but rather bring the OR to him. They prepped the ICU and the area around his bed for surgery. 3 hours later, Dr . Chen appeared and reported they had performed the miracle of closing his chest. Harrison's heart was protected.
Our journey continues as Harrison again waits and heals. His lungs are still supported by ECMO, his kidneys are supported by dialysis, his breathing is assisted by the ventilator and he still has what seems like a million drains coming out of him. We have, however, made progress.
Dad is trying to return to work. Mum puts her own business work on hold. Together they are trying to support both Harrison and Olivia emotionally, spiritually and physically. Mum and Dad pray that somehow they will be able to pay the bills, mortgage and cover the health costs. We continue to pray for guidance and support.
This roller- coaster ride is not yet over--- physically, emotionally or spiritually. We will continue fighting and will update as more victories are won.
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