Our lives up until Wednesday 12th July were pretty stressful. I'd say more stressful than average, with a 6-week old business in an industry Ahmed and I know nothing about. House renovations still dragging on and living out of a suitcase. House & dog sitting and biding time until we could move back into our house. Completely blown out renovation budget. Juggling part-time work with running kids around to school, activities and whatnot, and often working full days at the day job, then all evening at the cafe, trying to keep things ticking over and trying to remember to feed the kids, etc. Normal stuff of being a parent, but compounded somewhat with the new business thrown into the mix.
All that stress and life-juggling disappeared in a flash and became so entirely insignificant when we got a 4am phone call from an ambulance that was speeding into Palmerston North hospital with Maya, who'd woken up in the night vomiting and having seizures. Mum had sat with her being sick until it became clear she needed some emergency help and was she having a distraught ride into the hospital in the ambulance with Maya. Our drive to Palmerston North was fast, fraught & sobby. The swelling in Maya's brain continued to come and go over the next few hours while we waited for Starship to fly their plane down to us. A wild rash would spread across her face and chest and her heart rate would fly up and up. The doctors looked panicked. Her eyes were fully dilated and dead looking. It was the most desperate, horrific & helpless time. I was certain this was the end of Maya's short beautiful life. Starship arrived, we boarded their flight to Wellington (closer than Auckland and they were desperate too - I only learned that later). The neurosurgery team took her straight from the ambulance and off she went to have some of her skull cut out and the blood clot removed to allow all that pressure in her brain to expand freely and not kill off all the bits that make Maya Maya.
For the next seven days, at Wellington ICU and then PICU ('P' for paediatric) at Starship hospital in Auckland, Maya lay sedated on a bed while her face, eyes and head swelled up. She was hooked up to ECG tabs, a codman (a wire inserted into her brain to measure brain pressure), a ventilation tube, NG and OG tubes, arterial lines, central lines, IV drips, a catheter and little tabs on her toes and fingers. To move her from one bed to another (e.g. for the ambulance ride) was a full two-hour process of removing and reconnecting a gigantic tangle of cables and wires. In those seven days, Maya's temperatures kept rising and falling, her blood pressure was all over the show - up, down, up, down. While the ICU nurses kept telling us not to worry, Maya's monitor beeped all day and night long, constantly going over or under the parameters they'd set for ideal. All the other ICU patients around us seemed to be lying there in quiet contentment. She was kept sedated and intubated this whole time. As the sedation levels dropped, her left arm and leg would start wriggling around and making movements to pull out tubes. There was a lot of talk of her having to learn to become left-handed, and discussion about how much or little movement she'd have on her right side.
Tuesday 18th July.
One week after the haemorrhage started, Maya had an angiogram to shoot some dye up through the arteries in her brain to see what was going on. No sign of an AVM and the most likely explanation was a self-destructing AVM (arteriovenous malformation) which had ruptured and and then basically destroyed itself in the process. Horrid, stupid thing to cause all that pain and terror for our child. Straight after the angiogram, the sedation was reduced and as Maya grew more awake and agitate, the horrid ventilation tube was removed. Her breathing was so raspy and her cough sounded so raw, but thankfully it stayed out. For three more days, Maya stayed in ICU under observation and then on Friday, off she was wheeled to Ward 26A: Neuro Services.
Tuesday 25th July.
Maya has now been in Ward 26A for four days and her progress is remarkable. Her right side sprang back to life the minute the ventilation tube was removed and although it's noticeably weaker than her left side, she remains a staunch right-hander. Currently she has balance and fatigue issues, but they may well disappear over time and with practice. Two days ago, she picked up a pen and drew a shaky but recognisable cat. Since then her drawings have been getting better by the hour almost, but are still missing a lot of the fine details she usually pops into her pictures. Her understanding is generally there, but responses aren't. She can come out with some stock phrases, or the beginnings of them, which seem kind of appropriate but don't always exactly fit the situation. She's extremely cuddly and needs a lot of reassurance that we're there, we're going to be with her, or we're just going for half an hour, as she seems quite confused about where she is. She's loving quiet activities, like me reading books to her, drawing, or just sitting and looking out the window. Today we were finally given the go ahead to walk out of the ward to an outside garden area, which was lovely, but two minutes into that, Maya quite clearly said: 'Let's go inside'. I checked that she really did want to go inside and she did and was quite relieved to be back at her bed and in her familiar area. So sometimes she is able to come out with something that makes sense in the context, other times, it's a repeated: 'and so, then she's gonna, and so, then she's gonna, etc.' Hopefully, with time, her speech and cognition will return.
Her next steps include surgery to replace the bone flap from her skull, which will probably happen late this week or early next. After that, and with continued progress, a move to a children's rehabilitation centre on the North Shore. There, Maya will be working on regaining some of the cognitive functions that she's struggling with, mainly speech and recognition, as well as building up her physical strength, balance and weaker right side. The unanswerable question remains: how long will all this take? Who knows. In the meantime, we're trying to work out a plan for our family that includes this unexpected and unknown period of time spent in Auckland, keeping the business ticking over and thriving, maybe continuing to work for Emma? (but looking increasingly unlikely at this stage) and making a decision on whether Sammy will be in Wellington or Auckland predominantly over this period of time.
