Day 58 – #100 day project

Day 58 of 100 (19 of writing) – Friday 28 April – 05:30 am

Today I am starting a series of posts about how and why I have become involved in advocating for family/whanau voices in the Disability space. This is a background to why I am passionate about helping families who support their disabled child have access to ordinary life outcomes. This is my experience

First off, I want to say that I am extremely grateful to live in New Zealand where we have social and health policies that provide support to our sick, injured and/or disabled people. I am well aware that in many other countries, access to the care we receive here is either something you pay for out of your own pocket (if you have it), or that in many, many countries there are no facilities or services to look after those that are unable to take care of themselves. Our standard of health care is very high and in our situation it is only because of the advancement of medical care that we have two children, and not just one. If, our son, had been delivered earlier than the 2000s, it would be highly likely that he would not have survived or he would have lived in a hospital and/or institution. If he had been born in an underdeveloped country he would not have survived past the first day. To this day, almost 20 years later, in some countries he would not survive. So, in many, many ways we are lucky, grateful and forever in debt to society for paying their taxes and making our healthcare system what it is.

Our early days of care for Mitchell were all about getting him to breathe. There was so much going on and so many issues that needed to be looked at by different doctors, but none of these things mattered if Mitchell couldn’t take a breath for himself. And he couldn’t. He needed to be intubated and put on a ventilator to breathe for him and to keep him alive. We repeatedly saw him fail extubation (over 10 times), but tried to remain hopeful about his future. His care needs were so intense that we spent just over 2 years in Starship hospital, most of that time in the PICU (Pediatric Intensive Care Unit), where he received one on one care.

There were many challenges while we stayed in the hospital, a nightmare of logistics around being at the hospital with Mitchell, home with Holly, Phil trying to work and all of us trying to get enough sleep. In that 2 year period I had less than 10 days when I didn’t go into Starship, Phil had only 3 days he didn’t visit. It was arduous, as anyone who has cared for family or friends in hospital will appreciate. But for us, there was no question on whether we should be there or not – the biggest challenge was balancing Mitchell and Holly’s care. Having twins, where one (or in some peoples case, both) has complex problems took our time management to another level.

Mitchell finally came home with a tracheostomy, on a Bipap ventilator system, with oxygen, a feeding tube and with a list of medications for us to administer. We were so relieved to finally be home, that we underestimated how his care would impact our lives. We came home with Carer Support and Family Options funding, giving us an allocation of night time support and an allocation to use for subsidising family to help us at home. A rule that was in place at the time was that we had to use the contracted providers to recruit our caregivers. The standard providers of Focus 2000 and Healthcare NZ struggled to find carers who could upskill to do trache cares and they would not guarantee consistent/regular staff, which just didn’t work for the level of care we required. Starship arranged a dispensation for us to use Miranda’s home care (a non contracted provider at the time), who were willing to give us a dedicated team. A month or so before discharge the caregivers were sent into the hospital to train on trache cares. After being in an environment where we had one on one PICU trained nurses and a team of consultant doctors we were now in charge, with a small team of carers with no previous experience using a ventilator, oxygen, feeding tubes or traches. It was positive to go home, but pretty daunting at the same time. Knowing that a few minutes without oxygen, or the trache tube was life threatening for Mitchell. Keeping in mind that even some nurses in the hospital were not trained on tracheostomy cares and this meant either Phil or I had to be with Mitchell at all times for emergency care.

Just before we went home, we took a trip out to Auckland Zoo from the hospital to ‘practice’ being away from the professionals – we did take a nurse with us, but the idea was to transition to being in charge.

Within a few months, I was exhausted, depressed, feeling isolated and wondering how we were going to keep going. With the help of both Starship and Kidz First doctors, our NASC (Family Options), our community team at Kidz First, we had a review and got more support hours funded. I was at this time, unable to drive the car with Mitchell by myself to go anywhere, as we needed a 2nd pair of hands to be there to suction and monitor him – things I could not do while driving, and that needed to be done immediately. Our ‘night sleep’ times (where we had a caregiver from 10 pm to 7 am), were full of constant interruptions – getting up when there were desaturations of oxygen, vomiting from reflux and/or when our son struggled to sleep. While this was going on, Mitchell’s twin was also waking constantly in the night, and often coming in to sleep with us. A habit we would not break for a few years. Those first few years before school started were relentless and often lonely. We consider ourselves fortunate that our parents pitched in. Phil’s Mum and Dad with taking care of Holly frequently and my Mum coming to our home every week to be with Mitchell and I, to help and be my emotional support.

Back then, I did not call my son ‘disabled’ or refer to him as a person with a disability. I described his status as medically fragile or that he had complex medical problems. He was simply a baby/toddler who had a rare condition, that affected his development, he did not speak, he was not eating via his mouth, and his fine and gross motor skills were very delayed. We took him wherever we went outside, with the exception of the beach, pools or in a sand pit – as these were places that were dangerous to his health because getting sand or water in a trache were major health risks. We didn’t take him to any communal places, such as malls, supermarkets, or events where there were crowds of people, due to the risk of infection. Our conditions were not unlike those people experienced in the pandemic – avoid crowds, wash your hands all the time, avoid contact with other people. The busiest place we would visit regularly was the hospital when he was often readmitted due to constant respiratory problems.

What we could do was walk, and we would walk for miles, I would load up the double buggy, with both kids, a suction machine, a bottle of oxygen on my back and the usual toddler items and off we would go. Walking kept me sane – it was essential for me to get out of the house and have some feeling of control over my life. Perhaps one of my first memories of discrimination due to disability was during this time when we were denied an extra bottle of portable oxygen per week. Our allocation was 2 small sized bottles, giving us around 10-12 hours per week where we could leave the house. The amount of time was related to the oxygen prescription. I asked for an additional bottle per week, as most days we would walk and go to the park for around 2 hours. I had phoned our community nurse who referred me to Kidz First Hospital who handled the oxygen allocations – the woman I spoke to denied my request as she said we were already on the maximum allocation for home oxygen. I couldn’t understand why there would be a maximum allocation and she said it was because if we were using more than that we must be misusing it. I did not understand – how do you misuse oxygen? She explained that I must be leaving it turned on when we didn’t need it – ah no, we use it all day, and at night we use big bottles and/or a concentrator. So, if I am not ‘misusing’ it can I please have an extra bottle? She said, “No”. That made me feel like she thought I was a liar. Oh boy, at this stage I had started to cry and wail, ‘so you are saying I am only allowed to leave the house for 10 hours per week? You are saying that this is all I am entitled to?’ The conversation went on, with me telling her that if I didn’t get more outside time and sunshine, that my depression would be her fault. Eventually, she said ‘Yes’.

I think that was one of my first wins against a system that imposed restrictions around our life choices. It taught me that you have to challenge rules and regulations, to find out why they are in place. Looking back I realise part of the ‘rule’ around 2 bottles was more likely cost related and also that sometimes rules get introduced/enforced because of misuse. But I still to this day can’t comprehend why anyone would misuse oxygen.

To be continued >>>

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