Wednesday, May 30, 2012

Wishes do come true...

Well some wishes anyway.

Today I received a phone call to say that Ashlea has been approved to receive a Starlight Wish.  She has no idea what that means but her sisters are VERY excited to help her choose her wish!  At the moment they are very keen on a Gold Coast holiday to visit 'the worlds'.


I feel surprisingly emotional about Ashlea being granted a wish.  It is so lovely that we have this opportunity, but it also tugs at the heart strings to think that my baby has been sick enough to qualify.  People's generosity to enable this is amazing and it will mean so much to our whole family.

Now the fun part - we got to think of what we want to do!  Anyone else received a wish?  What did you do?  We are open to suggestions!

Today Ashlea's only wish was to sleep in this box.  Surely we can help her come up with a much better idea!!


Tuesday, May 29, 2012

(Wo)man Down!

Aunty Carolin has the bug!

Ashlea is still in hospital but seeing as we are managing her with oral feeds (her IV blew - that always happens - it usually gives out about a day before we need it to) I am going to take her home straight after bloods today.  I think the doctor would prefer Ashlea stay a little longer but they aren't doing anything here that we can't do at home.  Emma and Audrey are mostly recovered but still not 100% - I need to be home with them seeing as Aunty Carolin is out of action.

I'm the last (wo)man standing.  How long before I get hit???

Did I mention how much I really, really hate gastro??

Sunday, May 27, 2012

ABOVE AND BEYOND

Oh dear!

Emma and Audrey have both been struck down and are now vomiting.

Aunty Carolin is in the middle of a gastro crisis.  

Talk about going ABOVE AND BEYOND the call of duty.

How long before Carolin and I succumb do you think???

Did I mention how much I HATE gastro???

Ashlea update

Ashlea appears to be feeling much better today.  I'm hoping this isn't too serious a gastro bug and that she will recover quickly.  We had to bring her in yesterday though as her belly was really swollen and hard - to the point where it was making it hard for her to breath (the doctors said she may have been 3rd spacing but I don't really know what that means).  We have given her a break from feeds for 24 hours and she is much improved.  She has been on IV fluids and they have allowed her stomach to drain via her PEG (and yes that is as gross as it sounds - but seeing as she can't physically vomit it's the only way to 'let it all out').  A lucky nurse got to take a culture from her nappy too so we should be able to find out the name of the evil bug that has made her sick!

Now that her gut has had a rest it is much less swollen and she is quite chirpy.  We have just started running some pedialyte at 20ml/hour to see how she tolerates it.  So far so good - if she can tolerate it we will increase her feeds, get the IV out and get out of here (not today but maybe tomorrow).

Her kidney function has remained good throughout - probably because we started on fluids straight away.  Today's creatinine was 33 - can't complain about that!

Ashlea and I are pretty bored in here.  Don't tell Aunty Carolin but while she is running my kids to birthday parties, ironing school uniforms, making lunches and generally preparing for the week ahead, I am sitting here reading a trashy magazine while drinking tea and eating chocolate!! Shhhhh.

Hopefully we'll be able to come home tomorrow.  I can tell Ashlea has had enough as whenever anyone medical comes near her she says "GO AWAY ABOUT ME" in a bossy little voice!

Here she is - yesterday in ED:



Today asleep under the ipad:



Not happy when I removed the ipad:


(Sorry for the blurry phone pics but I was giggling at the ipad marks on her face...).

Saturday, May 26, 2012

Oh Crap

My best laid plans to get Murray home today have turned to crap. Literally. Ashlea has gastro - I am typing this update from the ED - we are getting admitted shortly.

This morning I had to go up to Murray's hospital and convince the nurses that I should NOT bring him home. I think the bed had been allocated to someone else but I told them I would most likely have to take Ashlea to the ED this afternoon and they decided it would be best for Murray to stay in hospital for a couple more days. There is no way I could supervise him AND stay with Ashlea at the same time. Also he only has one kidney now too - gastro is a BIG deal for kidney patients and the last thing he needs.

So Ashlea is currently in resus but we are getting admitted to the ward shortly. Thankfully there was a very sensible nurse running triage who saw us in the queue and brought us straight to the desk and from there we were brought straight in. It never surprises me how many 'not that sick kids' are in the triage queue - thankfully we bypassed them all.

We are hopefully going up to Variety ward soon - where everyone is either contagious or at risk of contagion so it is all single rooms. I can't handle shared rooms anymore!

I'm not sure how long we'll be here. Ashlea is pretty miserable. Please pray for her recovery - and also for the rest of the family not to catch it...

Friday, May 25, 2012

One more sleep!!!

One more sleep until Murray comes home!

He keeps asking me if it is a definite thing - I don't think he wants to get excited just in case it doesn't happen. I've told him not to worry - I'm going to MAKE it happen!

Tomorrow it will be 8 weeks since his injury. In some ways it seems like it has been a very long 8 weeks, in other ways it feels like it is 8 weeks that have flown by. Or maybe it's not that they've flown by - they've just become a blur in my mind!

We are really looking forward to all being together again.

I am wondering though if some of you who haven't seen Murray for over 2 months are thinking "What on earth will I say to him after all this???"  The good news is he is still the same person as he was before so just talk to him the way you always have.  His short term memory can still be a bit patchy but it is improving all the time.  However you can imagine that after eight weeks of getting your memory tested multiple times a day the novelty has worn off - we’d love to have visitors but please don’t try and help him by testing his memory.  Or mine for that matter (no I still haven't found the wedding ring...).

One more sleep...




Wednesday, May 23, 2012

Another BIG thank you


The meals, cards, helpers and gifts keep coming - thank you to everyone who has been so generous!

Today I have to give a BIG special thank you to everyone at Murray's work.  They have been very busily selling cupcakes and sausages and holding raffles and have raised $2770 for our family!  That's a lot of sausages!!  Thank you so much.  Your generosity has been amazing.  

Everyone's generosity has been amazing - we are very appreciative - and very aware that there is no way we could have gotten through this without all your help.

THANK YOU!

Monday, May 21, 2012

Rumour has it...

That a certain husband of mine is coming home from hospital this Saturday.

For good!

He will continue to go back for rehab a couple of times a week - I don't know the details of all that yet - I just know the most important bit!  He is coming home!!!

We are all very happy in our house this evening.

Friday, May 18, 2012

Emma and Audrey

Quite a few people have asked me how Emma and Audrey are coping with everything that has happened.  You can see by these pictures that they are either their usual, crazy selves dressing up and playing games - or they are seriously in need of some therapy - I'll let you be the judge!!





Seriously though I feel like I have completely dropped the ball with them at the moment.  Their behaviour combined with my lack of patience has not been a good mix.  Last night we decided to draw up some new behaviour charts to try and positively reinforce some good behaviours rather than just have me yell at them when they do something I don't like.  I thought it might be helpful for me to have a chart too - for using a calm voice and not yelling.  I'll let you know who fills their chart with stickers first - me or the kids!!

I have a new found respect for all my friends who are single parents - I never realised just how tough it is!  Even though I am able to cope with the practical side of doing all the work involved with looking after the children, it's the weight of the responsibility of being solely responsible for the welfare of these 3 little people - and the lack of respite - that is really a challenge.  Also I don't feel like people have really twigged to the fact that I am a single mum at the moment - and will be for quite some time.  Even when Murray comes home it will be awhile before I can leave him on his own let alone on his own with the kids.

On the whole though I think Emma and Audrey are OK at the moment.  We have managed to keep their lives as normal as possible throughout this whole ordeal.  They seem to be coping with the fact that I keep sending them to school with the wrong news topic or without their library books.  I'm sure this has had an impact though - and if Murray doesn't make a complete recovery it will continue to have an impact on their lives.  If any of my local friends know of any respite/support/siblings type groups for kids like mine please let me know.  Emma has started attending siblings groups run by the CPA as I really want my children to meet other families like ours.  Other families where things are a bit crazy at times.  Where people have to go to hospital. Where there are only certain things we can do and many things we can't do because of Ashlea's limitations.  Other families that live in Bizarro World!

Wednesday, May 16, 2012

Back To School



 


Ashlea had her first day back at school today!  She is so ready to go back and has been so bored at home - the only thing keeping her away is the risk of infection.  It is not a good time of year to go back with winter coughs and colds approaching - especially since Ashlea has developed the delightful habit of licking (yes licking) the palms of her hands.  It's completely gross and the perfect way to transmit infections - if anyone has any tips on how to stop it I'd be most grateful!  At the moment she is just going to attend one day a week but I am hoping to build that up fairly quickly (mostly because I spent my free time today sitting in the sun reading a book - I need me some more of that before I have to go back to work!!).

I think she had a good day at school.  She did have to receite to herself regularly that 'Mummy is coming back to get you later' and she may have lost it altogether when I picked her up in the afternoon but I think she enjoyed herself while she was there!

Of course I tried to get a photo of all 3 of the girls together - and as usual it quickly descended into farce. 

Tuesday, May 15, 2012

Random Stuff

Random Stuff #1
Is it weird that I run into more people that I know when at the Children's hospital than I do at the local shops?

Random Stuff #2
You've been to pathology too many times when you just KNOW as soon as you see who is on whether you are going to have a good or bad morning (today was not one of the good ones).

Random Stuff #3
The gifts keep turning up at our house!

Thank you to everyone who has dropped off meals and other goodies.  Thank you to today's anonymous gift giver who left two petrol cards in the letter box - they will be used quick smart!

Also big thanks to a new friend Brie who does fabulous work supporting Defence families in Australia.  She sent a pack of her Your Defence materials (among other things) to the girls - even though they are designed with military families in mind they work just as well for prolonged hospitalisations!!  The girls made these letters and we've sent them to Murray - I've included some pictures so you can see how great her stuff is:




Random Stuff #4
Ashlea does not sleep in the day anymore - except for when we walk to school in the wheelchair. There is something about the extremely bumpy ride that jolts her off to sleep.  Surely this can't be comfortable???  And yes - she is sound asleep in this picture!



Sunday, May 13, 2012

Mother's Day

I have had a lovely Mother's Day weekend which has surprised me somewhat as after my disappointment on Friday I was not expecting to.

Murray was able to come home yesterday and today for a few hours each time which was lovely. We had a family lunch for Mother's Day today, I received a surprise bunch of flowers (anyone want to own up so I can thank you???), and last night I was able to go out to dinner with my Special-Needs-Christian-Mums-in-the-Hills friends (Kath weren't you going to come up with a better name for us?  And a logo??) which was just what I needed.

This morning I loved getting the gifts my girls had chosen for me from the school Mother's Day stall - I never knew how much I needed a solar powered dancing flower until today.  Ashlea hasn't been at school so didn't have a gift for me - but look what she pulled out at lunch time!  I think all up she ate about 4 mouthfuls of custard, 1 or 2 cheese and bacon balls and 2 or 3 spoonfuls of ice cream.  What a great Mother's Day present!

I hope you all had a great day too.


Friday, May 11, 2012

So Frustrated

I have been trying all week to speak to Murray's therapy team to try and get an update on how he is going and see if I can bring him home overnight for the weekend.   Finally I got a message from the nurse today saying the doctor said no to overnight leave.  She seemed surprised that I was not happy with that answer.  The only way I could get to speak to the doctor directly was to ring his secretary and tell her I needed him to call me with either a very good reason why Murray can't stay home overnight, or to tell me what the consequences would be if I just didn't return him.  That got his attention and I got my phone call but was met with an unbending "We never do that, he is funded as an inpatient, blah, blah" bullshit excuse.  Sorry for the delicate among you who don't like the swearing - but seriously isn't that the most crap excuse you've ever heard??

I am so frustrated and disappointed.  I was really hoping Murray could come home Saturday afternoon and stay until Sunday lunch time.  It's Mother's Day on Sunday - it would have been so nice if we could have all been together on Sunday morning, but it's not going to happen.

Once I finally got the doctor on the line I made sure I got an update about how they think Murray is progressing.  The therapy team are all happy and can see that he is making progress.  They feel he should stay as an inpatient for at least another week and then possibly look at coming home but going back as a day patient 3 times a week.

I'm sure the doctors up there all think I'm a nut case who is totally not coping with this whole situation.  Murray's file already notes wife is understandably very angry - which is kind of funny seeing as I'm not angry.  It's just that on the day that was written the doctor had told me I would have to drive Murray back to Westmead every week for his kidney appointments and I had told him in no uncertain terms that there is no way that would be happening unless they could perfect cloning or time travel in the next 6 days.  That became wife is very angry in the notes.  Today I had a total meltdown on the phone with the doctor when he said Murray couldn't come home - it will be interesting to see if that makes it into his notes :)

Ashlea had bloods today and her numbers were stable - creatinine 36 and tacrolimus 7.5.  She is still doing extremely well and will have her first day back at school next Wednesday.  She is so ready to go back - she spends her days talking to Talking Larry on the ipad and watching this Kittens video on youtube which she (all of us actually) can recite word for word. She is READY to go back to school!

And to finish here is some Ashlea cuteness - new glasses - just in time for her return to school.



Wednesday, May 9, 2012

Tuesday, May 8, 2012

True Confessions Tuesday


No Easter Egg confessions this time - this week it is a REAL confession (although for those who were wondeirng what the final tally ended up being I stopped counting the bags of eggs once I reached double figures).

Today's true confession is much worse.

I LOST MURRAY'S WEDDING RING!!!

When Murray was in ICU they had to cut it off as his fingers were swollen.  At the time Murray's sister texted me to say she was taking it home - which made me absolutely  LOSE IT.  I had a total meltdown about how no one but ME should have the ring and I made a big scene and made sure I got the ring back.  It was  not one of my most rational moments but for some reason the idea of anyone else having his wedding ring sent me a little crazy at the time.

Once I had the ring safely in my possession it was taken home and put in a safe place.  I can even remember having a conversation with my sister about the location of the safe place.

Do you think that either of us can remember where that is now?

Murray keeps asking where the ring is and I keep having to confess to him that even though he is the one in rehab with short term memory problems I am the one who can't remember where the ring is!

Sunday, May 6, 2012

I still believe

I have been wondering if you all have been wondeirng what I think about everything that has happened.  If I watched someone else go through all this I'd certainly be wondering what they thought about it all!

So here is what I think.

I think I still can't really believe what has happened and I think it is kind of crazy that all this STUFF has happened to little old us.  

In spite of that though I still believe that God is in control.  If He really is the God who holds the entire universe in His hands He is also in control of this.  He could have prevented Murray from aspirating - but He didn't.  He could have prevented Murray from being found for another 10 or 20 minutes - when it would have most likely been too late - but He didn't.  He has allowed (chosen even) for this to happen.

Other than that I don't know what to think.  I don't know why this has happened.  It's one of those unanswerable questions.  WHY?  I don't know.  But I am going to keep trusting the God who is in control of all the events of our lives.  As much as I know there are some people who could not believe in God BECAUSE of events like these - I can't NOT believe. I can't imagine getting through something like this without having the hope that comes from being a Christian - without the hope of heaven - and knowing that one day all the suffering of this life will be OVER AND DONE WITH. 

Please keep praying for us - for Murray and Ashlea's recoveries and also for Murray and I to have soft hearts to whatever it is that God is doing in our lives.  You could also pray for me too as I drive to and from the hospital in my current distracted state - today I ran a red light on the way there and then nearly reversed into someone on the way home. Oops.

Thursday, May 3, 2012

Scan Results

Ashlea's scan from Tuesday came back all clear.  The reason they did the scan (a MAG3) is because her ultrasound the week before showed some 'things' (a dilated renal pelvis) that could have indicated a blockage.  The scan showed that there is no blockage and that everythinig is working well.  Her creatinine is still a healthy 32 and the doctors are very happy with her.  There are even rumours that she can go back to school one day a week starting next week.

Murray had a kidney check up this morning and the good news is that his creatinine is now down to 200.  For someone his size a normal creatinine (with 2 kidneys) would be around 100.  With one kidney it should be around 120 I think (but can take awhile after surgery to reach that) so things are definitely heading in the right direction.

Now that Murray is busy at rehab and Emma and Audrey are back at school, Ashlea and I have had some free time this week.  I tell you it is doing my head in.  All I can think about is what has happened.  There is never a moment when it's not all in my head. Problem is that having free time does my head in, but being around 'normal people' and doing 'normal things' also does my head in so I don't know what the answer is to that!  I do know that spending time with other people who have complicated lives like ours seems to help.  Even if their circumstances are completely different - if someone has suffered loss or had a hard time in some way I find it much easier to relate to them.  They 'get it' on some level - and hopefully I can 'get' their situation too.

So fellow inhabitants of bizarro world - feel free to drop in for a coffee!  Ashlea and I are often free during school hours - you just have to be healthy to join us.


Tuesday, May 1, 2012

Easier or Harder???

I can't decide if its gotten easier or harder over time to take Ashlea for medical procedures.

In some ways it is easier - we are very familiar with the hospital now and with the way things are done.  We know how to get things done as efficiently as possible.  Ashlea is reasonably tolerant of blood pressures, weighing and measuring, poking and prodding - even blood tests to a degree.  Even I am more tolerant of blood tests - I can now watch the needle go in as well as the rummaging around under the skin to get it in the correct spot.  When the blood flashes back into the tube I tell Ashlea excitedly - the blood is coming!  We're nearly finished!

Other times I think its gotten harder.  Ashlea is older now.  She can (and does) protest much more vigorously.  She knows she doesn't want to have the procedure done.  She begs to go home. 

Every so often I am reminded of just how much she puts up with.  Today Ashlea had a kidney scan that she had to literally be strapped to the table for.  Thank God - again literally - thank God for the person who discovered or invented midazolam - without it this would not be  possible:


What a brave (and quite stoned) little chicky.