Toa’s Battle

On Friday 21st July, 2 yr old Toa, had a Febrile Convulsion at home and was taken to hospital via ambulance. They kept him in for observation and ran a number of tests, then released him the following day. Over the weekend, we monitored him closely and knew that he wasn’t right. He had purple hands and feet, running a fever and was very lethargic and not his usual self. First thing Monday morning, we took him back to the hospital and he was assessed by a nurse who asked if anyone from the hospital had called to advise that test swabs taken on the Friday had come back as positive for Influenza B, but they had released him without waiting for the results.

After more tests, scans and assessments, Toa was put on medication and was being treated. However, the Doctors got it wrong again and had missed something, which resulted in Toa’s condition declining rapidly and he was needing to be put on a ventilator and transferred to Children’s ICU department. They pumped his little body full of morphine, fentanyl, antibiotics, steroids and many other medications and he was sedated into a coma. Toa's little body needed to be resuscitated and it took hours for them to stabilise him as he was very Hypoxic.

What happened next would change his life forever! He was then placed on the HFOV ( high frequency oscillator ventilator) to help move all the mucus stuck in his lungs. It got to a point where the only other option after that was to put Toa onto a heart and lung machine ( ecmo). Thankfully one of the medical staff decided to just give Toa a chance to fight it himself with the HFOV machine and thankfully he did as Toa started to respond beautifully to it.

That’s when Toa’s parents decided that they weren’t going to give up, just as they had done at Toa’s birth. His little heart was still beating and they decided “we will show you he’s still there”.

Day by day as he was slowly weened off the sedation he reacted to mums voice, to mums tickles, to commands and it was clear that our beautiful boy was still there. Once his saturations were steady and improving, they weened him more to see if he would wake up, and Praise God, he opened his eyes and moved a bit. What a huge WIN this was for us, for him, and yet the nurse on shift commented saying “You know he’s not really there” as if to take away from the huge milestone that our little Warrior Boy had achieved.

The decision was made to lower the drugs, which irritated Toa as he was becoming tolerant to the drugs. They tried to take him off the ventilator and finally, they got him on HiFlo. However being on the ventilator has taken a huge toll on his body. He has no muscle tone, no control of his neck, he can’t hold himself up, he can’t walk, he has withdrawals from all of the drugs and he is being tube fed. From there, it has been a rollercoaster of illness, infection and we know that the battle is just beginning.

A few days ago, he was discharged from ICU into a ward full of other children with respiratory illness. It was advised by the ICU staff that Toa be put into a separate room due to his low immunity and susceptibility. While we challenged the nursing staff and doctors daily, to provide an isolated space for Toa’s recovery, unfortunately this has fallen on deaf ears. Now Toa has contracted RSV (Respiratory Syncytial Virus) and has been admitted back into ICU. Today we were advised that he is a very unwell boy and his condition is going to get worse.

Today marks exactly one month since Toa was first taken to the hospital. We thank God every day, we thank the medical staff that believed he could and stood up for his life even though others would push back, we thank our whanau (family) and friends for all the well wishes, prayers and daily check in’s.

Our amazing Warrior Boy, Toa, has had to endure so much since being born at 24 weeks gestation. Toa is Michael and Henry’s only child and they’ve worked so hard to provide an amazing life for him.

He will have to re-learn everything again and we foresee a long road ahead of rehabilitation, many doctor visits, specialist visits, optometrists, speech therapy, travel costs, ambulance fees, appointments, special cleaning equipment, occupational therapists and therapy equipment.

Due to Henry and Michael not being Australian Citizens yet, Toa currently isn't eligible to recieve NDIS ( National Disability Insurance Scheme ) Funding to help with all things rehab.

There is also a huge financial cost involved for with accommodation, food, parking and travel to and from Wollongong as they had just moved into their new place the day Toa had his Febrile Convulsion. This no doubt will continue for some time so we would like to support them and hope that it will ease some of the burden of what they are going through.

A little helping hand from all who can, would be greatly appreciated.

with love the Morgan/Godinet Whānau.