A Social Day in Hospital

What a huge day? It's not long after 8.30am and I've left Billy-Joe to snooze. He is exhausted after the day we've had. Not much of today was spent in bed. Basically from 10.30 onwards we were busy.

Billy-Joe went off with Max, the physiotherapist. She did some walking beep test stuff with him today. His lungs coped okay, bis ankles and knees not so well. We definitely need to look into these joint problems too. We want to get our boy to the healthiest he can be, to not be hampered by undiagnosed and untreated pain. Just before he headed to Physio a friend of ours Pete arrived, bearing gifts of scrumptious chocolates for both of us. Pete andi went downstairs for coffee. We were still sitting there when Billy-Joe finished. I was expecting two other visitors and I didn't tell Billy-Joe who was coming. Cath and Blake arrived, with Nan and Darby, Chrissy and Carlee in tow. What a lovely surprise. We sat and had another coffee and then headed to the ward so Billy-Joe could be hooked up to his IV again. Then we went into the Parent Room and Cath cut Billy-Joe's hair. It Looks so much better shorter. We went back to the ward and I had a late lunch. After his antibiotics were finished we decided to go on our walk.

We walked over to the Food Court had a drink and another sit out in the fresh air and the. We walked back. I could see Billy-Joe was had it when we got back.

We've gotten to the point where we don't even think that we will go home soon and we've fallen into a new routine in our new ward. The doctors visited us this morning and told us they were still not happy with the temperature spikes. They are trying to decide whether or. Ot to give Billy-Joe a CAT scan as they're concerned there might be an abscess, or something that the 'bug' has developed to make itself resilient toward the antibiotic. It all sounds rather serious to me so there's no way I'm going to be painful and push to go home. There's too much at stake.

Bunny is visiting tomorrow,bringing us some we things we need, including my MacBook and some school work for Billy-Joe.

I can say we made the most of today. I made Billy-Joe laugh loads of times. I'm trying to get him to eat more too, that's hard with the cruddy food he gets. He's actually hanging out for one of my stir fries!!!!!

One Week Post Surgery

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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Looking forward to better days.

I glad we've both got good outlooks otherwise today would have been dreadful.

I was quite sad this morning when we were told that we would have to move out of our ward. Wed grown rather comfortable there and already had a routine. The room was quiet with only one other patient and we had lots of room. I would spend the day in a very comfy recliner and then at night I'd roll out and unfold and make up my bed and push the recliner I to the bed's day spot. I was right beside Billy-Joe the entire time. I'd leave to go and have my shower and sometimes I'd go and have a cup of tea or I'd walk across to the main hospital to buy some food or go to the chemist but I was there all the rest of the time. I had offers to be collected so that I could spend the time elsewhere but I don't want to be anywhere else. Billy-Joe is relying on me and my company so very much. As it was now that we are in a new wars I cannot sleep beside him as there's not enough room for the stretcher. So I'm outside the ward and along the hall. I've set up my bed in a large open room which has breakfast facilities, lounge chairs, showers and toilets. The view is lovely though lol. It's a little lonely and strange.

The highlight of my day was Mike bringing my washing. What a kind and lovely man!! Now I have some fresh clothes which I like to wear. It's cooler here so I really misses the longer pants. Thank you Sheree for coming to collect my washing yesterday.

One of the doctors visited again this afternoon and told us we had to be patient. With the severity of the pneumonia they're not taking any chances. Sounds ominous. I wonder how kong we will remain here.

My baby boy goes on his first camp tomorrow and I won't be there to see him off and possibly won't be there when he comes home.

Peter is missing me badly. So good to hear his voice.
We've never spent so much time together before,well not since he was a baby. We've always been close and now we are even more so. We are so much alike it's a little scary. We can co exist very easily and harmoniously.

Update from RCH

I'm so glad I'm able to keep updates while I'm here. I would have killed for an iPad whilst I was in hospital and Ronald McDonald House. I could have kept a journal of all that went on, I kno I've fit some details scratched into a notebook somewhere but a blog would have been awesome. I just hope ive done justice to the last week as far as recording.

I've kept positive the entire time I've been here. I've been stressed and worried at times of course. But I've managed to keep my attitude buoyant. This has had a twofold affect. I keep my own spirits high, and Billy-Joe benefits from that. No point me being miserable and a sad sack, that won't help him at all. I fear that it's hardest on Peter in many ways. He's continuing on at home with work, the house and the kids. Bless his heart but he's not used to working and doing everything at home. I've had bouts of doing that and it's hard. In many ways I found it much harder when we didn't know what was going on. I know Billy-Joe is in good hands and that this is the best place he can possibly be.

I've just been downstairs. A lovely angel just arrived to wash my unmentionables and my clothes I've been living in. I thought we were going home today and I've been wearing the most comfortable stuff. Thank God Sheree was Ble to drop everything to pick up our waging. Suzy (My Personal Shopping Angel) bought some singlet tops and a nice pair of yoga pants which are co comfy and I'll get heaps of wear out of at home. They need a wash now. Barbi was here yesterday and has quenched my Pepsi Max addiction. Dear Bunny ga e me some money so that my credit card gets a rest.

It's after two thirty and I'm ready for a rest. It's busy here and the relaxed moments are treasured. Billy-Joe has another fever so is feeling a bit flat now. I hope he bas a kip.

I spent last night researching doing my nursing degree some more. I could do it part time. It would take me six years. By that time the kids are out of school. Definitely something to think about. I could still be eligible for HECS/HELP as you're entitled to 7 years full time and I've only used 3.

Only God knows what the future holds.

Update

The days here have passed by very quickly. I can't believe we have now been in Brisbane for this our sixth night. If anyone is like me and loves the full medical terminology of things Billy-Joe has a Complex pneumonia with a 
pleural effusion and empyema.  When you read at length about this I'm totally amazed at how strong and patient my boy has been. He's been through a lot. Actually he's still quite ill. While the surgery is behind us and the intercostal tube has been removed there is still a huge hill to climb. He still has a temperature everyday, has no appetite and is severely lethargic. He's still receiving nasal gastric feeds which is keeping him well nourished. Even if he were eating what's normal for him it wouldn't be enough to give him all the nutrients he needs. 

He's had enough of being here. Peter is convinced he'd get better quicker if he were home. I'm not 100% convinced we are out of the woods yet and would rather stay here than go home too soon. At least help is close at hand here. In many ways it's easier for me to be here with him then to have him in NGH. He'd want me to spend the day with him which of course I would do, but then all my other responsibilities would still be waiting for me at home. This way I can focus on him and he can e my priority without me being torn by all the other things I need to do too. 

We are fortunate as we are in a two bed ward and the other patient and his Mum spend many hours at home each day. So it's a peaceful room. The nursing and medical staff are awesome.   

I've even spent much of this evening researching a nursing degree. I don't know. I am comfortable in a hospital environment. I love the medical knowledge I have and am always interested in knowing more. I'm probably getting too old to pursue a new career. I mean let's face it, I've never really had one. A career is something that you can grow with and advance through. What I've ever done, even the teaching I've done has always been just a job, never a career. 

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