Note: This was written on Wednesday, 24 October 2012 but I was unable to post it then because I didn’t have Internet access in hospital.
I want to write a post about my week, but words are simply failing me. To say it has been a tough week is a serious understatement. But at the moment I feel so emotionally drained by everything that has happened, I just don’t know where to begin and the words just aren’t flowing like they usually do.
It all began on Monday when Lil Z had her appointment with FECS. FECS, or Family and Early Childhood Services, provides physio, occupational and speech therapy for children like Lil Z. It also has a social worker and psychologist to provide support for the carers of these children and ensure that we are connected to all the relevant services, get the equipment we need, and that kind of thing.
Previously, Lil Z received therapy through the RCH. Her therapists were known at the hospital as the “dream team” – and they wholly deserved that title. If it wasn’t for them, I’m not sure how I would have made it through the first 6 months after Lil Z’s special needs became apparent.
So, I wasn’t enthusiastic when we first started at FECS. But I was soon won over. The team was fantastic. They worked hard to understand Lil Z and develop activities that would help her development, to make sure she had the right equipment, and to link us into all possible sources of support. And they did things to try to make my life easier. A few weeks ago I was asked to do a questionnaire about the quality of services we’d received through FECS and the only negative I could think of was that we didn’t get to see them every week – only every fortnight.
It was our appointment on Monday, when we were told that we were effectively being kicked out. After being told initially that it didn’t matter that we are only temporary residents, somewhere an administrator has decided that it does matter. Generously, they’re going to allow us two more sessions to wrap up, but after that, Lil Z will be without allied services. Lil Z’s therapists aren’t happy and are still investigating if there might be some way Lil Z can stay, but I’m not hopeful.
Fighting back the tears, I tried to focus on our session with the speech therapist. He has been helping us with Lil Z’s feeding issues, which had taken another turn for the worse. After watching her eat (or rather refuse puree and a bottle) and then cough, gag and splutter, he voiced his concerns. He was worried that it was now more serious than just a stubborn toddler refusing to eat. He was also concerned about her sleepiness and that it was increasing her risk of aspiration (inhaling fluids into her lungs) which can cause pneumonia and lung damage.
He promised to consult with Lil Z’s speech pathologist and neuro at the RCH. However, I was so concerned when I left that I decided to phone them both myself. I also booked her an appointment with the GP to have her cough investigated.
Tuesday, I went to the GP who said Lil Z had a chest infection and prescribed antibiotics. Returning from the GP, our nanny – who has cared for Lil Z since she was 5 months old – resigned with only two weeks notice. She’s found a job that pays more and has better hours. I can’t help but think the appeal of the job also has to do with the fact it’s a healthy toddler she will be looking after, instead of Lil Z.
Head still swimming from the news, I headed to the RCH for an emergency appointment with the speech pathologist. My favourite neurology registrar also came to the appointment. Just telling them how little Lil Z has been eating and drinking made me feel sick with guilt.
Lil Z cooperatively drank a bottle of milk while we were there, and the speech pathologist said she didn’t think there was a problem with her swallow – which was a relief. However, the Neuro Reg was concerned about what has caused Lil Z to go from a star eater to refusing nearly all food and drink. So, he recommended we be admitted to the RCH.
Admission involved giving Lil Z a nasal gastric tube, so she can begin to receive adequate levels of nutrition and hydration. Being there when the nurses put the tube in was horrifying. Even more horrifying was when Lil Z managed to partially pull the tube out – twice – when they gave her the first feed. I lost it a little then…
This post is turning quite lengthy, so I won’t even go into how on Wednesday I was scheduled to present at a gas conference in Brisbane, and how despite the kind understanding of my company, I felt like I was at something of a turning point in my career. Needless to say, I made it to the conference, I gave a passable (if uninspiring) presentation, and didn’t have a nervous breakdown, despite the almost comedic mishaps on the day (like forgetting my make up bag at the hospital – so I wasn’t just giving a presentation, I was giving a presentation with no make up on…).
But here we are now, on our second night in the hospital. It’s late and Lil Z is snoring in her cot. I have secured fold-away bed beside her and we are in a 2-bed room with a partition (instead of the horrible 6-bed rooms we occasionally end up in), so the situation is as good as it can be, I suppose.
Lil Z looks better for having 2 days of nutrition and antibiotics pumped into her. Her Neuro (by far my favourite doctor at the RCH) has lowered Lil Z’s Trileptal dosage to see if she becomes more awake – and if that improves her eating. The paediatric team is monitoring her closely. And an occupational therapist is coming tomorrow to see if she can help get to the bottom of why Lil Z now gags and chokes whenever she has anything in her mouth.
The fear of all the doctors is that Lil Z is regressing. I think back to Pancake Day, earlier this year, when Lil Z ate a whole pancake that I tore into little pieces, and I wonder if she is.
And we have new vocabulary, too. The doctors don’t want to send her home “medicalized” – which effectively means that we become not only her parents, but also her medical carers, that she needs medical measures to assist her with every day living. I don’t want her to go home medicalized, either. So here we remain in the RCH, hoping against hope that things will change tomorrow and the bad week will stop being quite so bad.