Thursday, October 22, 2009

Home Bound

Josh had a better night last night than the previous one, and his temperature didn't go above around 37.7 so that's good. His doctors are quite sure he should be able to go home tomorrow, so fingers (and everything else) are crossed. An antibiotic called Augmentin is being given into his PEG and the one via IV has been stopped. So far so good...

Theres so much more than what I write about that goes on, both within the hospital, with Josh and on a personal level. Its a combination of either forgetting about it 'til later, too lengthy or complex to write about, or unable to share due to privacy. :-/

Wednesday, October 21, 2009


So much happening, and yet, nothing really...

JF stayed with Josh overnight Sunday and Monday, however I'll stay of a night the remainder of Joshy's time in hospital.

His temperature had continued to spike; it would often and quickly reach 38 or 39 degrees (celcius), 3 different courses of antibiotics had been given, but nothing seemed to work. Or rather, when the third one was given (via IV, as were the others), and it appeared to be working, the same kind was then given via his PEG, but his temperature would rise again. Then, on Sunday, the cannula where his IV was running in his arm tissued, which basically just means the area to where the needle was running became blocked and/or swollen and had to be removed. The other unfortunate thing was that even though he was given Panadol and Nurofen, his temperature didnt come down.

Another cannula was inserted Monday, into his left foot. Ouchies.

Yesterday, bloods, sputum and a urine sample were taken, so they could be tested further.

Josh had a nap early on the day yesterday, and then was asleep again by 5.45pm, and stayed asleep until 2.30am. Then he was awake, or merely dozing for the rest of the morning.

His temperature reached 39.6 or so around 5.30 this morning, but this time he responded to Panadol.

One of the main doctors came by this morning, and although so far the samples are not showing anything obvious, theres still no definative answer as to what the main problem is. Theres evidence of possible residule pneumonia, but they dont think thats anything to worry about now.

Sunday, October 18, 2009

My Kids

I took this pic of the kids a couple of years ago - Josh would of been about 5 months old. I had the kids lay on the floor beside Josh as I figured that would be better than them trying to jostle for a seat of the lounge and hold Josh up at the same time.

A little while later, I won an online competition where a fellow scrapbooker (Mish?) turned my pic in to a gorgeous canvas!

On Friday night before Josh left for Melbourne, I took an update...

Now, to find time to turn it into a worthy artwork also...


Since Josh has been in hospital - 8 days now - he has been on 3 different antibiotics. The first course were I think a broad spectrum antibiotic to cover the most common infections and also based on his own infection history, and then, after a swab was taken and the bug discovered, a more specific antibiotic was given. Unfortunately, a few days later, another bug was discovered (continued high temperatures), which is why course was changed again last night, and it will be another day or two before it can be said that this is effective.

Josh's other problem right now, and its rather urgent, is his high tone (hypertonia). In normal terms, this refers to the stiffening and rigidity of his body. With his legs and feet, for example, it's as if he is constantly flexing them. Can you imagine straightening your legs, and your legs bending the opposite way?

It has been an increasing problem since day dot of his accident, but in the week or two before Josh went to Melbourne, we noticed an increase in stiffness. In fact, a day or two before they left, on one occasion, it took 15 minutes to get him out of his car seat and in to the house. I moved the passenger seat in front of Joshy's forward and down, and massaged and stroked his legs, I waited, I sang, and yet, with everything I did, each time I tried to move him, Josh would extend his legs, his toes sometimes got caught, and then he'd be in pain and Id need to manouver him in to a more comfy position without breaking him. In the end, I literally lifted Josh over the side of his seat, straight, like a plank of wood.

He could be like this because he is unwell with his infection at the moment, although one Doctor seems to think its because his botox has worn off (which we don't agree with because of its "suddenness" and also because he only received botox to the upper part of his body about 2 months ago (botox lasts about 3 months), and his upper body is just as stiff as the lower half).

So, Josh is remaining in hospital until tomorrow (hopefully no longer) to await assessment from our rehab team and (also hopefully) put in place their recommendation. It could just mean an increase in his current medication, or trying something new.

I'm home tonight with the other 4 kiddies to get things ready for their return to school tomorrow and then Ill return to the hospital to see what the Doctors recommend...

Saturday, October 17, 2009

On Edge

After a distressing occurrence in ICU on Thursday and my subsequent reaction, I shouldn't of been surprised to find out how quickly news travels within the hospital, but I was. The NUM of the ward where we are now pulled me aside to see how I was.

Just when Josh was due to be transferred, something happened to the patient in the bed beside him. The curtain was already drawn, and I didn't turn around to look anyway. I could see the sudden frantic change in the nurse who had been looking after both Josh and that patient. She ran out of the room, and came back seconds later with what almost looked like the rest of the ICU staff. There was controlled and calm urgency, with trolleys and equipment moved, and people in and out.

I stroked Josh's forehead. I started getting hot. I didn't need to see, to know what was happening.

I heard the defibrillator charging. A nurse asked me if I was okay. I thought I was.

Then I heard "Everyone clear!" And the Doctor said it again, "Everyone stand clear!"

And that was it! I kissed Jojo, and ducked and weaved my way out of there!

I cried in the hallway for what must of been mere seconds, and made my way down to the parents tea-room. The same nurse who asked me if I was okay only moments earlier had followed me in, to check on me, and I told her that it was just a bit too close to home at the moment. That it could of been Josh. It could still be Josh. She said she would let me know when it was okay to return...

I cried in the courtyard for a while, but not only was I crying for Josh, and myself, but now also for this little girl. Was she okay?

After 15 minutes or so, I was feeling composed, and somewhat ready to go back in to the room, and as I entered, without looking directly "there", I understood that things were okay.

And a few minutes later, we left ICU for the general ward.

In hospital

We arrived at the CHW Wednesday evening, and "patiently" waited in the waiting area of ICU for my little man...

About 1/2 hour later we went in, and woah! talk about a rush of memories! The smells; antiseptic hand wash, saline, formula - the sounds; some crying, hushed voices, machines beeping and buzzing - and of course, the sights; precious little bubs, bandaged kids, anxious carers...and there... there was my boy, and it was all I could do to not burst into tears straight away! I'm such a soppy girl. :-)

Ive stayed with Josh the last 3 nights. Actually, to be honest, the first 2 nights, while he was in good hands in ICU, I slept in a parent's room in another ward. The oxygen he was receiving through a mask was slowly decreased, and everything else seemed okay, and so yesterday he was transferred (back down to the ward where we were for his first stay at the beginning of the year) and so I slept beside him.

Each night he goes to sleep, like a regular kid, around 9-9.30. He simply closes his eyes, his breathing slows, and he is quiet. This is a pic I took - its so cute. He often does this while sleeping; must be having sweet dreams!

Monday, October 12, 2009


What follows regarding Josh is in effect mostly hear-say, so I'll keep it brief...

Josh had a temperature on and off all week, including the Saturday evening he arrived in Melbourne. HBOT commenced last Monday, with 2 hour sessions in the chamber, twice daily. He seemed to cope fine, not requiring any more suctioning than usual, and got "restless" toward the end of a session. The pressure in the tank was increased slightly on Thursday, but turned back down when it was apparent Josh had bloodshot eyes.

Saturday morning he was taken to the Children's Hospital, since the medical centre was closed, as there were concerns about his breathing, increased stiffness (which we had been noticing for a couple of weeks before treatment started), and his temperature.

He was admitted immediately, and later transferred to ICU, where they've been trying to not only determine if Josh has a respiratory infection, but also understand his breathing and manage his secretions.

There was talk almost immediately of Josh being flown back to Sydney by air ambulance, so I remained here. Originally that was scheduled tentatively for Tuesday, but this has now been changed to Wednesday. Again, his breathing and secretions need to be understood and stabilised before he can be considered for transport. He was on a BiPAP machine for a period of time, and as far as I know, is now only on a oxygen mask.

Its horrible being so far away.

I feel Josh will get through this, as he has done the last few months. But I also fear that this may be a regular occurrence...

The last few days have been extremely emotional (particularly for me) in more ways than I can say here, with of course the obvious being Josh and being so far away, but also other highs and lows concerning my kids.

However, as we do, we take another big breath, pull our shoulders back, and walk on.

Friday, October 2, 2009

Off to Melbourne

Josh is being picked up from me at 5.30 tomorrow morning, for his HBOT in Melbourne.

Honestly, I have mixed feelings about it all. It's hard not to get my hopes up, when so much is dependant on the next few weeks, you know? And of course I will miss my Jojo incredibly. I also know how tough this is going to be on JF, and wish him strength through it all.

On the other side, is the time I will get to spend with Kayla and Kane (My 2 big girls will be away for the week). I believe its valuable time we really need. We've got almost everyday planned already, even some time to plant the vege patch we've been talking about!

After spending more money on my car for a new battery and terminals, and then another stint in the mechanics for a blown hose, Ive cranked up the search for a suitably modified car. My dad's been helping me, and we've checked out a few cars, including a local wholesaler who has been really helpful... fingers crossed; may even have something in time for when Joshy comes home.

Thank you to every one for your well wishes for Joshy's imminent trip. Ive also had numerous comments about how good Joey's looking in those recent pics Ive posted, however - and I'm trying not to burst any bubbles - he mostly doesn't look like that. Most times he is either sleeping, or drowzy-looking from concentrating so much on his breathing. As I told a friend, those last few pics of him have been taken after a shower, so perhaps I should shower him every few hours?! :-)

Finally, another huge thank you to Michael and Rachel, and Strategic Aviation, because without you, this trip may never have happened. xx
Copyright 2009 Joshua