The past few months has been a mixed bag of events. From the height of celebrating Diyanna’s 6th birthday, a long overdue family trip, to the lowest point where Diyanna was in hospital.
Dinesh and I have always tried our best to ensure that we keep her safe. The lockdowns, restrictions, social distancing protocols, mask mandates and other safe practices made it easier for us to protect her. But with Covid19 being very much non-existent in Australia and with the push to return to a pre-Covid normal, the challenge of keeping Diyanna safe increased. Up to this point Dinesh and I have been able to do so without further complications. As in previous pre-Covid years, winter brings out all types of infections.
Diyanna caught a virus while waiting to see her specialist at the children’s hospital. It was her first face to face visit in over a year. Within 48 hours of that visit, we were in the ED. Diyanna was having extremely high fever with coughing fits. The Xray showed a very small change in her right lung. Blood work didn’t show anything of significance and her nasal swabs were negative. So, we came back home after a 6 hour stay in the ED with some antibiotics to be on the safe side.
Diyanna was improving and we were able to take her to another appointment at the hospital. A few days after that she started getting worse. Back to the ED we went again; there was no dramatic change in her Xray, her oxygen levels and heart rate were normal. Back home we came with another round of antibiotics.
In the middle of this we celebrated her 6thbirthday, a birthday we thought would never happen! For the first time in her life Diyanna was able to share her special day with little chirldren just like her at her new school. Watching them all sing Happy Birthdya to her and showing her so much love was beyond amazing. The students, staff and principal of Darling Point has made schooling a positive experience for Diyanna and for that we are so greatful. The celebrations continued surrounded by family and friends. Although the celebration was wonderful, the stress of Diyanna’s infection, the lack of support and the ring around NDIS was putting us through made the situation harder and more stressful than what it should be.
A few days after her birthday, Diyanna’s condition worsened. Back we went into the ED. This time there was significant changes in her right lung. Her white blood count was at 48 and her oxygen was down to the low 90s. She was hooked on to a high flow machine, IV antibiotics and sent up to the wards.
In the morning her team told us that the current infection was bacterial and was highly likely due to aspiration. This was something that we had tried hard to avoid. And we had successfully done so for the past 5 years. To me this was a big blow, all our hard work went down the drain. This is her first pneumonia since July 2019 and her first ever bacterial infection.
Aspiration is when food or liquid is swallowed the wrong way and enters your lungs. The germs or bacteria from the food or liquid then infect the lungs. In a normal scenario our bodies actively work to prevent such things from happening which is why we cough or choke. But for children like Diyanna these functionalities are slow and sometimes non-existent. This puts them at high risk and over time can cause serious damage to their overall health and life expectancy. Aspiration can happen in two ways. Primary aspiration which means swallowing food or water during feeds into the lungs or secondary aspiration which can be caused by swallowing reflux, postnasal drip, or saliva. From birth Diyanna has been at risk of aspiration but after swallow studies, safe feeding practices, and Diyanna’s strong cough, primary aspiration was ruled out and was never an issue. Secondary aspiration however was of concern. But 6 years we had avoided both forms of aspiration.
Over the next two days we talked with many members of her team. We were able to narrow down the cause to be a form of secondary aspiration. Reflux has always been a problem and had been under control, but we underestimated the how the lack of equipment, support, or adaptation for Diyanna’s posture, neck, head and spine would impact her ability to swallow safely.
As we go about daily life we don’t even think twice when we sit up or eat or drink or ride in the car, they are everyday activities that we take for granted. It’s hard for people to understand or imagine what it’s like for Diyanna and by extension the complexity and difficulty we face in taking care of her. “Put her in a collar” is the first reply from a lot of people. Which is understandable but is frustrating to hear as it’s not as simple as that; if it was, we would have done it by now. The slightest change in her position can mean aspiration; like being able to sit up, carrying her from her bed to her chair, carrying her to the bathroom, placing her in the tub, carrying her down to the floor for her therapies etc. If not done right, puts Diyanna’s life at risk.
For Diyanna to sit up she needs a wheelchair with the proper head and neck support which works for her. We have tried several, but none have worked so far. For her to wash, she needs a shower bed that supports her head which at the moment doesn’t fit in the bathroom. For her to travel freely in our home means that doorways and passageways need to be made bigger to fit her wheelchair (the wheelchair needs to be tilted to help with her head and neck and turning circle). For her to go to school, to church and to hospital a wheelchair accessible vehicle is needed. Right now, Diyanna is carried from her bed to her chair, from her chair/ bed to the bathroom, carried in and out of the tub, carried down to the floor for her therapies and carried up and down stairs. etc. If these transfers are not done correctly, we put Diyanna’s life at risk.
Over the last year Diyanna has grown to be a beautiful little lady. She is tall for her age but combined with the extremely low tone of her body handling her safely is becoming impossible. At a minimum two people are needed to help her. After a 5 day stay we were able to take her home. We went ahead with the family trip that we had booked and planned for at the start of the year. It was our first in 4 years. It was not the trip we had planned but Diyanna started getting better and the fresh air and calmness of Noosa North Shore gave us some breathing space we needed. It gave us time to regroup and reevaluate our next steps and get back some energy to keep fighitng.
Over the past 6 years Dinesh and I have made do with whatever equipment and funding that was available to us but what we are doing now is not sustainable. The constant battling with the NDIS to get the funding for equipment and modifications approved is stressful and takes up a lot of time (and in our case, energy) and everything is at a standstill it is as if they (the NDIS) are keeping us hostage. The uncertainty around it makes life distressing and knowing that we are putting her life at risk everyday makes it hard for all the people that love her and care for her.
There is only one thing that Dinesh and I know is true. Without the equipment and modifications Diyanna’s life will be short. But how we solve it is a question we have no answer to.