Jesse was in congestive heart failure from the time he was put in our care until he had his heart repaired. As with most heart babies he had feeding difficulties and struggled to suck his bottle. The exertion tired him and he would sweat profusely. I would have to place a towel under him to absorb the moisture he would produce. He was developmentally delayed and was followed by the neonatal psychologist until he was 5 years old. He was fortunate he was placed in my care as this delay did not trouble me and I embraced the challenge and set to providing early intervention that I will post about as I go along.
At this stage his heart condition was of primary concern. Here is a link to explain the condition.
http://www.rch.org.au/cardiology/health-info.cfm?doc_id=3543
Because of this he was checked frequently by his cardiologist. In hindsight I was so besotted with my boy and had become compliance. We went from weekly to fortnightly appointments and I still had the view he would not need surgery until he was 4 years old. Jesse was a blue baby. His lips and around his mouth showed
What a shock I had when at what I thought was another routine turned into a medical emergency. His cardiologist found his liver was enlarged meaning the blood from his heart was back flowing into his liver. He need surgery immediately and because of the complexity of his condition he need to be flown to Royal Children's Hospital in Melbourne. This involved us flying from the west coast of Australia to Melbourne. Within 15 mins of walking into a regular appointment we were scheduled for flight across the country and major surgery 2 days later.
Traumatized and distraught I made contact with our local support group HeartKids WA. This wonderful support group informed me about what I needed to take and gave me invaluable information about what would happen. I remain very grateful for their support over the years.
On the day of our departure Jesse woke with a cough, snotty nose and temperature. Still distraught I phoned his cardiologist and had to rush him into his clinic only to be told he was too unwell for surgery and that it would have to postponed and was rescheduled two week ahead.
It was a long two weeks. Knowing that your child's heart is a time bomb doesn't help a parent's anxiety levels. Again I was grateful the counsel from lovely Tania from Heartkids. She supported me during this trying time. Tania was to die prematurely from breast cancer.
Once in Melbourne my anxiety escalated. His surgeon the talented Mr Mee explained that he didn't know whether Jesse would have a palliative or full repair. Because his right ventricle was hypoplastic he didn't know if it was viable and wouldn't make that decision until Jesse was in surgery.
Waiting for a child in surgery is tough. Chandy and I went walking. We didn't know Melbourne and walked with our anxiety. We stopped for something to eat although neither of us ate much. We had some alcohol and a little tipsy we headed back to the hospital. We got lost on the way back and had to get a taxi back. Once back at the hospital we had a very long four hour wait as surgery progressed. Final we had the call that he was out of surgery and in PICU. We had been taken for a tour of the intensive care unit the day before and I knew immediately he was doing OK as he wasn't requiring a lot of support. Again I was lulled into a false sense of Okness. I went out to phone Tania, family and friends. Chandy stayed with Jesse. While I was calling Jesse had some sort of crisis with alarms and whole support time dash in and Chandy escorted out. Fortunately it was a bit of a blip and we where allowed back in when he was stabilized.
Jesse made a rapid recovery from his cardiac surgery. Mr Mee had done extensive repair of his heart. He had found that Jesse's right ventricle was of borderline size and perform a full repair. This involved a right ventricle muscle resection ( imagine scooping out the flesh of a coconut to make a larger area). He had a second pulmonary valvotomy, a transannular patch (this was described to me as a patch across the hole in his atrium that was like a cat door that would open and close depend on the pressures in his heart) and an atrial septectomy when a hole was created to allow free shunting of blood between the two atriums.Jesse's journey and my anxiety wasn't over yet. He was only in PICU for 12 hours before being move to the high dependency unit. Once there he was found to have a blood clot in his left leg. As he had a significant right side hemiplegia the loss of function of his other leg would have further disabled him. He was scheduled for surgery to remove the blood clot. The surgeon described the surgery as going down an artery the size of a match stick to remove the clot.
Jesse recovered well from this surgery and five days after major cardiac surgery we were headed home to the west coast to recover and move on from his first right side overhaul.
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