Harvey’s long recovery

On the 2nd of July our son was born, due to Harvey’s mum and I both having heart conditions we had an echocardiogram during pregnancy at 24 weeks and a thorough exam at birth and everything came back perfectly fine so at 3 days old we were discharged home. At 5 days old Harvey wasn’t waking for feeds and on his owlet sock showed a heart rate of 180 even while sleeping. We took him to our local emergency and on arrival he had a heart rate of 225, within a hour we had the head of paediatrics called in and him on the phone with NETS, John hunter and Westmead children.

4am that morning we were flown down to Westmead grace NICU. He was soon diagnosed with a condition called Accelerated Idioventricular rhythm. This in a condition that’s not uncommon but incredibly rare in children and there is no known reason that Harvey could have this condition. He will spend anywhere from a few seconds to a few days in Ventricular tachycardia with heart rates consistently between 180-250.

During the few days we were trying to get a diagnosis for his heart we noticed he was having back to back pauses in breathing while sleeping. He was assumed after a sleep study to have central sleep apnea. After 6 days in nicu we were transferred to the Edgar Stephen’s ward (heart centre for children) where we spent 3 weeks.

Harvey was than discharged with a medication for his heart. This medication is rarely used consistently and rarely used on children. Harvey was on it 3x a day. He was also discharged with apnea machine and oxygen for his apneas

After 5 nights at home in our own beds Harvey’s respiratory rate was sitting very low and seemed to be having increased apneas we called a ambulance and were so glad we did as during the ambulance ride he turned blue/grey and although his heart was beating he was unresponsive. This was the longest apnea we had seen

We were admitted to the paediatric unit while we awaited to be flown back to Westmead. Since than he’s been having extensive testing to find out the causes of the apneas as of now we still are not 100% sure. Harvey’s currently on all the treatment available for apneas and unfortunately it’s not working for him like it should be. Harvey’s doctor said they’ve never seen a child not respond to treatment so they are unsure what to do and are looking for other causes.

Due to medications Harvey is on he has now developed 2 complications with his heart and is also undergoing a complete review from cardiology. He has been though extensive testing including ECG’s echocardiograms, holter study’s, sleep study’s, trolley study’s, MRI, EEG, genetic testing , sepsis workups, X-rays, ultrasounds and more. Our little boy has been through hell and back.

We have now been in hospital for almost 8 weeks since he was born 9 weeks ago. Due to his condition I have had to stop working to be there for Chloe and Harvey as we try to find treatment and a more accurate diagnosis for our little boy

With the cost of all the equipment, living in Sydney, parking, normal life expenses, grocery’s ect and with me not working things have gotten really hard for us. We spend a minimum of 22 hours a day at the hospital only leaving to eat dinner and shower. As much as we never want to ask anyone for money we’ve been living off savings and Chloe’s centerlink maternity leave and unfortunately we still have no date for discharge in our future. if there is any way that you could help we would be beyond grateful, a little goes such a long way in these situations.