Chapter 53
Wednesday 30 September, 151 days in hospital
104 days in PICU
Marika, Andrew’s favourite nurse, offered to take Zali for a walk outside the ward with me on the third day of Za’s extubation. Marika was a tiny little nurse, with very pale skin, long brown hair and the body of a just-pubescent teenager. What she didn’t have in size she made up for with a big plucky attitude. She was very smart, and very quick on her toes when it came to emergencies. She said we could take all the machines we needed, and CPAP just in case, but Za had enough immunity now to face the world. I was really keen to get Za out into the sunshine and the warm spring air but I was totally unprepared. For the past three and a bit months she hadn’t worn clothes, sometimes not even a nappy. I agreed to the walk and raced to the unit to get some clothes for her.
As I stepped outside the strength of the sun hit me. When had it become so warm, I wondered. Was it summer already? Where had spring gone? I instantly sweltered in my loose jumper and baggy pants.
We had bought some new clothes for Zali just a few days earlier, including an adorable white dress with coloured flowers on it. In the sun she might burn after so long out of it, so I also packed a large oversized hat. I packed washers in case she got dirty, wipes for the same reason, antibacterial wash for hands, socks for cold feet. My heart pounded as I raced back to the hospital. Lach was at school, Kala was at school, Andrew was grocery shopping. I was on my own for this huge event, but I had Marika with me, and she would be careful with my tender emotions and my muscle-less bub.
When I got back to the room Marika had everything ready and was waiting impatiently for me. She had organised for a special pram to be brought up from the physiotherapist. It was big enough for Zali to be in a seated position but leaning back as she had no stomach muscles to support herself. Marika chided me for taking so long and we left immediately.
Zali was as uncertain as I was as we left the ward. I was familiar with pacing the corridors, so we wandered around the various levels and hallways as I got my strength up to be in the uncontrolled world outside the PICU with Zali. Marika pushed the stroller – she said so I could walk next to Zali. I actually think she pushed it so she could get us to go further around the hospital grounds, like a personal trainer pushing you for one more set.
Zali was quiet in the stroller. She had her head turned to the side and was watching carefully out of one eye. After three months in the same room, with the same noises, people, smells and window view, this sudden explosion of life was daunting to her. She was okay, so long as we didn’t speak to her.
As we wandered we came to the exit of the hospital. Eagerly Marika asked if we wanted to go outside. I asked her if Za would be all right in the sun? Yes. Would she be okay with pollen and viruses in the air? Yes, she had immunity now. I paused, uncertain, but I was aware that the world outside the hospital was the real world that we belonged to and would have to join again soon.
‘Okay,’ I said, and I pushed the pram as Marika strode with pride next to me through the doors and into the summer warmth.
It was actually quite hot outside, and it was lunchtime, so the strength of the sun was at its fullest. We walked over to a bench seat under a tree and sat down. Marika produced an icy pole from nowhere and gave it to Za, who confidently slurped it as I held the stick and a washer under her chin. We sat in silence and watched the world. I couldn’t believe we were out here. It was so nice, but I kept waiting for something horrible to happen to Za. Some alarm to start shrieking, her to vomit, pass out or cry. None of that happened. We just sat in the shade under a tree on a warm summer’s day and she ate an icy pole. It was beautiful.
After about ten minutes Za started to get restless and irritable. Marika said it was time to return for her diazepam. We went quickly back to PICU and Zali was hooked up to pain relief again and administered some of her many medications. She went back to sleep almost immediately and I left to go and help Andrew with the groceries and tell him our amazing news.
As I left the ward I knew we had outgrown our intensive care home. It was time to go. I was sad, happy, scared and proud.
Chapter 54
Thursday 1 October, 152 days in hospital
105 days in PICU
The next day, Thursday 1 October, we had Hang, one of Mercy’s friends, looking after Zali. Hang was just as professional as Mercy. Dr Elle came into our room at about 10.30 am. She had an official, prompt and professional air about her as she entered with another doctor. She told us she was very proud of Zali responding so well to the pamidronate treatment. News of her walk outside had been shared around the ward and she was glad Zali was breathing so well on her own that she didn’t even need oxygen support any more. It was time for Zali to be discharged from PICU.
As she looked at Zali, she started to blink back tears. I thought of all the times Dr Elle had saved Za from certain death. Of the times she had let her play with her enormous platinum engagement ring, even forgetting it as she left. How she had read books to her, and cared for me when she cared for her. We both sat quietly blinking through our tears a little. I broke the silence and said simply, ‘Thank you for everything you’ve done for Zali, Dr Elle. You mean a lot to me.’ The sentence may be overused, but in my situation right then it was a massive understatement.
Hang was a blur of business as she began to prepare for Zali’s exit. I called Andrew and told him the news. The previous day, I had organised a French patisserie in The Rocks to make a croquembouche for the nurses and doctors who had helped us in PICU. One of the endless topics I had discussed with the nurses had been cooking, and the nurse Ann-Marie loved profiteroles. We left Hang with Za and went to the city to get the cake. That afternoon we presented the cake and eased into our last night in PICU with cake, weak tea and relaxed laughter. Zali slept for ten hours that night and I slept for six.
The following morning we had Hang again. There was a brief changeover from the nightshift nurse and by 8.30 am we were walking the corridor from one end of the hospital back to the Variety Ward. We were returning to the Variety Ward, which felt like home, because of the ESBL in Za’s line making her a risk to chemo patients, and because Za still had a lot of medication that needed to be taken care of each day.
As we entered the Variety Ward all the nurses who had previously taken care of us there came out to greet us. Everyone was very pleased and emotional to see us again. Lita had stayed after her night shift. She told us that each week after her Tuesday night shift a small group of them would come past PICU and visit Zali to see how she was before they went home. Also during the night, whenever someone needed bloods checked quickly, they used the machine in PICU and checked on Za. They had kept up with her decline and been very worried about her. Then they had heard about her progress and they were very excited to have us back in Variety Ward.
That day in Variety Ward, however, we had a nurse I didn’t think much of. She had been difficult to convince in the past that Za needed Panadol when she had fevers. She was more concerned with letting people know how important she was, and less concerned with listening to parents, patients or other nurses.
Hang took more than an hour to hand over to her. She explained Zali’s time in PICU, the major organ failures, the dialysis, the cardiac and lung problems, the bedsores, the intubation, gall bladder failure and the wide range of specialist intervention. The sum of all this work, over such a long period of time was that Za was here, alive, but that nobody knew how long this would last and that it was just as possible that things could turn around quickly should the LCH decide to make a speedy return while we were here. At this stage the various doctors involved were only giving us a cautious nod to say that she was recovering. Her recovery was a delicate situation that could change quickly.
Hang came to say goodbye afterwards but was frustrated and annoyed. She was worried that the nurse she had handed over to hadn’t listened to her and had been dismissive of the information she had been given. I assured he
r that we were strong enough to be able to handle ourselves now, and it would be all right if she left. I couldn’t believe those words were finally coming out of my mouth. The day came to an uneventful end, and for the first time ever, we slept all night in the Variety Ward, waking at 4.30 am as bloods were taken. Zali cried automatically, waiting for an X-ray of her lungs that would no longer happen.
That morning Andrew dropped off a bag of clothes for me, but had left nothing for Za. It had been eight days since we had been told that Zali would die on that dreadful Thursday and we were still trying to get our heads around the fact that she had made it and now had needs that were not directly medically related. All Zali’s clothes were dirty and I had nothing clean with me to put her in. Clothes were a novelty, and it was going to take a little while to get the hang of dressing her again. I did, however, have a large oversized pink and purple full-brimmed child’s hat covered in large flowers. I put Za in a clean nappy, and put the hat on her head.
She asked to ‘Wock and Woll?’ and we set off for a walk around the hospital, feeling like rock stars coming out after a show. We had a space of half an hour while she wasn’t hooked up to any IVs or needed medication, so I was keen to take advantage of some free time. I was excited by the hope that I would see our friends around the place and be able to show off my quickly recovering daughter.
The hospital was warm and we set out to the volunteers’ gift shop near the front entrance for some new clothes for the day. The gift shop sold quaint wooden toys, books, puzzles, nail polish, and handmade clothes made by the volunteers at the hospital. I thought Zali looked gorgeous as we strolled down the ramps to the shop. She looked just like any other toddler on a hot summer’s day: big belly, swollen by the first breakfast in months, hanging over the top of a fresh white nappy. The large floppy hat looked super-cute on her bald head, making her giant blue eyes light up. She felt pretty cute too, and waved and smiled at our friends as we passed them in the corridors, and I laughed with them about having a forgetful husband.
As we got closer to the shop there were more and more people from the public around the place as we were close to the Emergency Department. These people were outsiders to the hospital world. Instead of indulging smiles and waves from people we knew, we started getting horrified gasps and stares from children and adults alike.
As I walked into the shop I looked at Za. Her chest was covered in deep scratches from one side of her body to the other that were raw, or scabbing over from the insect-under-the-skin incident. Purple, red and brown stripes crossed from her chest to her pelvis. Her white central line curled in a large whorl under her collarbone, taped down by a clear plastic bandage. A yellow tube came out of her nose and was taped to her face with a white and clear sticky plaster just under her eye. Her arms and legs were still rake-thin and her head was oversized for her long, thin body.
I honestly didn’t see a sick child any more as I smiled at her. She smiled back, a big smile at being out on a shopping trip. A kind grandma who was running the shop assisted me with the door and helped me pick out clothes that some other kind grandma had made. I realised how far I had come. The hospital life was surrounding me with love and support and acceptance, and I felt completely at home.
Chapter 55
Friday 9 October, 160 days in hospital
Lachlan’s birthday was coming up after many months of life ‘sucking’ for him. All this time, we had been living in RMH accommodation, Za had not been out of hospital, and Lach had been worrying his sister was going to die and that he might lose his mum to grief. His birthday was on 19 October, but I suspected that if Za’s recovery continued as quickly as it had been, Za might be home by then, and his birthday might be hijacked by her needs. To make the most of his special day I decided to celebrate it early with him and made his birthday that year 9 October.
What he wanted most for his birthday was time with me, so that was my first present to him. By the time Lachie had got up that morning Andrew was already at the hospital and I stayed at the unit. I wished him happy birthday and gave him a big hug. He asked me what I was doing there and I told him I was spending time with him for his birthday present. He was so pleased, and plopped himself down on the couch to watch some breakfast TV and chatted about daily stuff as if we were at home on the coast. I think he would have honestly been happy with that as a birthday present, he was so content. I tidied up, did some laundry and went to the big RMH and had a cuppa and some biscuits with Lach.
About 10 am I said to him, ‘Come on then, it’s time to go out,’ and took him to the nearby Westfield’s. I told him we would buy whatever he wanted for his birthday. There was no time limit, no price limit. Just him and me and things he likes.
Lach is a good boy. I knew he wouldn’t choose anything extravagant. We went from shop to shop picking out shirts, music, sunglasses. We spent several hours there. Eventually, in a surf shop, my card was rejected. We had spent the daily limit. Lachlan was so pleased with the symbolic meaning of using up the limit. I had twenty dollars cash left on me so we went to the food court and bought a chocolate ice-cream, his favourite.
I took him home and made a rich Italian pasta dish he is very fond of. Andrew came home at 6.30 pm with Kala and we all had dinner together to celebrate the day. Andrew returned to the hospital after dinner.
I didn’t go into the hospital at all that day, which was tough for me. Andrew looked after Za and Lachie had an awesome birthday being the centre of my attention for a full day.
Chapter 56
Saturday 10 October, 161 days in hospital
We spent that first week in Variety Ward stretching our legs back in a moderated version of the world outside PICU. Although Za had responded to the treatment she had been given, she still had lots of X-rays and ultrasounds to monitor the calcium deposits, lots of specialist appointments, and lots of pamidronate infusions to keep up the good work. Nobody was willing to give us the all-clear just a week after treatment and we were being watched closely, but the longer we were out of PICU, the stronger we all became.
Before we left PICU I had asked for a list of Zali’s medications and when she had them. It had been printed out efficiently from the computer and given to me. We had the dismissive nurse on the first day and she was late with medication all day. On the third day, the dismissive nurse was on duty and she didn’t listen to us. She was glib and dismissed any information we gave her, and I was constantly chasing her for medications that were due. We were late all day again. When one medication is late it has a snowball effect, and although Za was no longer suffering from disease, I couldn’t afford to make her unwell by stuffing up some of the thirty-five doses of medication she had during the day.
Over the first week in hospital we had the hopeless nurse three more times. On 10 October, ten days after discharge from PICU, I was fed up with hospital life. I didn’t want to hear any more excuses about medications; it wasn’t that difficult to treat Za now. If they could give me the medications to give to Za I could do it on my own. Out of frustration I made the biggest decision I had made in the last five months.
There wasn’t any reason for us to stay in Variety Ward any more. Apart from the ESBL still in her central line, Za didn’t have disease, viruses or infections and didn’t need oxygen support. She was just weak and starved and vulnerable, and I could address that at home. I began to push hard for her to be discharged from the hospital altogether. The first day the dismissive nurse put me off, so I waited until I could speak with the doctors on the ward and the nightshift nurses. Over the next few days I hassled the daylights out of anyone treating us to organise outpatient services. I didn’t need people to say she had completely recovered and everything would be fine. I just needed them to agree that we could manage her medical needs from home. The more I thought about it, the more I wanted Za out of hospital. I could see the finish line and I was putting on a sprint to get there.
By Monday 12 October I was successful. All Za’s appointments with specialists had
been made as an outpatient. Her official prognosis was that she was continuing to respond positively to treatment. I understood that we weren’t out of the woods yet. We were in the arena of experimental intervention and recovery so no one could tell us for sure how long this would last or how much damage had really been done during the ravages of LCH. We would have to go to the Oncology Clinic daily, see Dr Munns twice a week, see the cardiologist Dr Roberts weekly, have ultrasounds, physiotherapy, X-rays for bone density, and visit the speech therapist for swallowing and chewing.
Most importantly, Za’s medications had to be organised, as I would now have to get them from the hospital pharmacy myself and administer them myself. Zali still had a nasogastric tube so medication could be administered easily, but the sooner she was able to take her meds orally, the sooner that could be removed. She would still have pamidronate to put through the line, firstly as an IV infusion then later as a dissolved tablet pushed through the nasogastric tube.
As I said, there were about thirty-five doses of medication I had to give her a day plus super-thick formula to help her put on weight again. The nurses organised them into a list for me, with all the amounts and time they needed to be given. It was a big job to undertake, but I felt organised. Time was speeding up again, and I was making decisions about our life again. I felt eager and unprepared, organised and naïve, but I was definitely ready to cross the finish line.
On the afternoon of Monday 12 October, after 163 days of living inside the hospital, Zali was discharged and became a hospital outpatient. As we walked out of the hospital building I felt like we should have had a tickertape parade for achieving this incredible moment. Kala was there, keen to make sure we were really leaving. Lachlan was there, annoyed that he had to help carry Zali’s stuff.
Saving Zali Page 23