Who would have thought that long Sunday spent in emergency would lead to such a long stay in hospital.
And we are not going anywhere in a hurry either.
Being in this new ward has had its down moments. Like I said yesterday I can't sleep beside Billy-Joe which isn't a bad thing because I actually slept and wasn't awoken by staff, beeping IV machines or moaning children. These a boy with cerebral palsy in the same ward. His Mum shores and he whimpers and moans. Poor Billy-Joe was in tears when I came back bedside. I really felt for him, his big sad eyes with shadows smudged underneath them in his pale face nearly broke my heart. It's not easy in this ward. I can't comfort myself either by saying that we've got it easy compared to the other kids and parents. Taking joy in another's misfortune doesn't bring me solace. I've used it for Billy-Joe more to help him gain an understanding of their situation, as kids so often are ignorant.
I have to focus on the situation at hand, it's my reality and something I need to consolidate within my mind.
In the morning we went to the gym with our Physio. Billy-Joe shot some hoops, and played on the Wii. Anything for a bit of aerobic activity, which helps expand the lungs and makes him cough too.
I'd woken up with yet another massive headache, which I couldn't budge with Nurofen plus. When it eased slightly but I was ready for more pain relief I walked over to pharmacy on my own. Billy-Joe wanted to come but I needed time on my own and wanted to be quicker as it's a fair way, even further now that we've moved.
Before I'd even left the floor, Dad rang which was lovely and much needed. It was good to be able to hear his voice and realize that home wasn't that far away. I got some meds at the chemist and then looked around the crowded food court to see what appealed. Peter rang while I debated joining the mile long queue in Subway. That was a much needed conversation and again it was good to be out of Billy-Joe's earshot. I could speak of my vasculitis concerns and let Peter know that the doctors were pretty sure it was in no way related to that. Thank God for that. During the conversation I faltered a little and held back some sobs. Peter offered to swap places but I declined. I know my place is here. I know that Billy-Joe needs me to be here. While I know Peter is doing it tough at home, in some ways it's not a bad thing. His appreciation for what I do has grown in leaps and bounds. He can still go to work and for the next few days Mickey is at school camp so there'll only be two of them at home, easy for Peter. Sammy on his own is a very serene child. Easy.
I bought my lunch and then headed back to the ward feeling proud of myself that I'm learning how to navigate this huge complex.
After my delicious Subway I went to have a lie down. The ward is so noisy and I don't like noise and when I have a headache I can't switch off from it. I slept on the two seater lounge for a couple of hours and felt much better for it. When I came back Billy-Joe had had a blood test. It was not without drama though as he has my veins and they're shrinking away from needles. The phlebotomist had two attempts and drew nothing. Protocol here states you only get two attempts. One of the doctors took him to the treatment room as was able to draw the required amount.
The Infectious Disease guys came to visit too. If the fevers keep spiking we could be here for another few weeks. We are hoping that the changed antibiotics will give him a better chance at going home a little sooner.
It's a day at a time.
I've been praying for patience and peace.
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