Sunday, April 29, 2012

Weekend Update

Yesterday was a beautiful autumn day in Sydney.  I was able to bring Murray home for a few hours and we sat outside in the backyard and ate lunch in the sun while the kids ran around.  It was a lovely time - just the way things should be on a sunny Saturday afternoon!

Today Ashlea had the day off bloods so I was able to go to church for the first time since 'it' all happened.  Just quietly I was a little stressed about going - it's hard to be around people at the moment - especially large groups of them - but the longer I don't see people the harder it gets to see people again if that makes sense.  So I decided to rip the bandaid off and just do it.

It's funny because while I am living this crazy life I can cope with all sorts of crazy things like rehab and doctors and appointments, I just can't do the ordinary, everyday things like grocery shopping, school drop off and church.  It is so hard to do the 'normal' things when everything else in my life is so NOT normal.

Sound crazy??

I'm sure those of you who have been through similar things can relate!

Anyway I went to church and it was OK but hard too.  Hard because its such a normal thing to do when life is definitely not normal.  Especially hard because it is something we would usually try do as a family.

I was hoping to take the girls to visit Murray this afternoon but I have been feeling quite dizzy this afternoon.  I'm not sure if it was my 'regular' dizziness (I have Meniere's so do get struck down from time to time) or if it is stress related.  Seeing as we have been through the wringer over the last 4 weeks there is a good chance it is stress related - and unfortunately there is no immediate end in sight to the stress.

I feel guilty for not going to visit Murray but I figured it probably wouldn't help the situation if I drove off the road into a ditch while dizzy - with the kids in the car.  Instead we have had a quiet afternoon at home - I have spent most of it lying on the couch with the girls creating carnage around me.

Please keep praying for us.  I am starting to feel the strain of juggling everything.  I'm stressed. I'm sad.  I'm over it.  But we still have a long way to go and the last thing we need is for me to fall into a dizzy heap.  Or any kind of heap!

Friday, April 27, 2012

The Chop

On the way home from bloods today I decided that today was THE day that I needed to do something about Ashlea's hair, so we stopped at a hairdresser on the way home and got it all chopped off.

At first we tried leaving it all the one length at the back, but the missing chunk was still too obvious.  Then the hairdresser tried an asymetrical style (think Justin Bieber) which I couldn't handle - so then we just chopped it all over.

Now she looks really different from Audrey!

Ashlea's blood results have been stable the last couple of days which means we have been given a day off from bloods!  I'm choosing Sunday morning for my day off and am now wondering if anyone would like to mind Ashlea on Sunday morning so I can go to church?  She is still meant to be avoiding large groups of people because of the risk of infection so I can't take her with me.

Murray is doing well up at Mt Wilga.  He had a kidney review at Westmead yesterday which showed continued improvement in his kidney function.  I am hoping to bring him home on a day pass for a few hours tomorrow so all in all its shaping up to be a good weekend!

Thursday, April 26, 2012

Guess who ate a spoonful of custard???

Guess who ate a tablespoon of custard today???

It may have taken about 30 spoon fulls to get the tablespoon into her but it's a start!

One of the biggest differences in Ashlea since the transplant has been in regards to feeding.  She can just tolerate her feeds so easily at the moment - she has NEVER been like that.  She has not gagged ONCE since she has been home from hospital - usually she would gag on nearly every feed.

While she has a steroid-fuelled appetite we are going to try and push her a bit with actual eating.  I figure it is now or never to try oral eating so we are giving it a shot - starting with the only thing she has ever tried to eat before - custard.

I think her energy level is better since the transplant too.  She has always had a pretty chirpy personality but I think she is even chirpier.  Possibly more talkative (although she was already pretty chatty).  Definitely bossier.  And perhaps even a smidgeon taller.  

It's very exciting to see these changes.  I can't wait to see how she goes when she gets back to school!

Wednesday, April 25, 2012

T +27 Lest We Forget

Today is Anzac Day.  Many of you know my Grandfather was an Anzac who fought at Gallipoli and on the Western Front so I like to stop on Anzac Day and reflect on the sacrifice so many have made for our country.

This year I have also been reflecting on Anzac Days past.  This day 6 years ago was the first time the doctors came to us and told us Ashlea might not make it through the night.  She was 5 days old, weighed 570gm and had gone into acute renal failure.  Her potassium was high, her blood sugar was low and she was ventilated - the doctors were doing all they could but they didn't know if it would be enough.

Who could have predicted back then how things would play out?

Who would have thought we would have - and love having - a child with a severe disability?  Who would have thought Murray would give her a kidney?  And in the process suffer a hypoxic brain injury??? 

What a crazy ride we've been on.  Sometimes it sounds so crazy I'm almost embarrassed to tell people our story - surely it can't all be true??  Has it really all happened to us???

And so here we are at Anzac Day again. Ashlea's kidney function is now great - the best it's ever been.  Her creatinine today was 31 but we are still juggling her tacrolimus dose - it seems she is very sensitive to it.  Hopefully we only have a few more days of daily blood tests - next week we should be down to 3x per week.  Murray has started rehab and is doing well.  He is mainly working with an OT on cognitive / memory training exercises as well as doing a little bit of physio.  He seems a lot more 'back to his old self' in the last couple of days.  It is very encouraging to see these obvious improvements!

Thank you all for your ongoing support.  The list of people to thank is now endless so I'm not going to even try!  If you have done something for us - anything at all - please know we are very appreciative!

Sunday, April 22, 2012

T +24

We've all had a quiet day today.

Thanks to the generosity of some friends I was able to buy Murray this educational device to aid his recovery :)

As you can see gaming is a well practised skill that has not been forgotten!!.

Saturday, April 21, 2012

T +23 Birthday Present WIN!

Today is Audrey and Ashlea's 6th birthday.

For months Ashlea has been asking for a jumping castle - and yes I caved and bought her one.

Oh my goodness - talk about money well spent.  She has been in it all day.  Seriously - such good exercise and cheaper than one in home physiotherapy session - great value for money!

Happy birthday Ashlea and Audrey!  I can't believe that the wheels that were set in motion 6 years ago have lead us to where we are today!  Speaking of which, Ashlea's kidney continues to power on - her creatinine today was 28 and her drug levels were well within normal limits.  I ended up paging the on call doctor last night to ask if I should worry about the knock to Ashlea's kidney - she said if there was a problem we would know about it as Ashlea would be in pain and would likely have blood in her urine.  She has been checked out today and all is well.

Murray was having a good day when I went up to visit him this afternoon.  Ashlea and I went up to visit while Aunty Carolin took Emma and Audrey to the 'chocolate cafe' for Audrey's birthday. They went there 3 weeks ago for Emma's birthday too.  Remember that day when Murray was in ICU fighting for his life?  Yep, that was Emma's birthday.  No birthday parties this year - not even a cake.  At least I bought all the presents well in advance!

Friday, April 20, 2012

T +22 What a day

I survived the day and managed to get my patients to their various locations in a timely fashion. It was a little soul destroying in the process though.

Ashlea is hating her daily blood tests.  All her veins are shot from constantly being accessed so it usually takes a couple of goes to get the blood out - by which time she is screaming and sobbing hysterically, crying out 'MUMMY' - as if to say Why are you letting them do this to me Mummy - and all the while I am holding her down and letting them do it to her.

I know it is for her own good but I really hate that I have to do that to her.  Every day.

Murray's blood test was less traumatic but it still somehow sucks a little bit out of you every time you have to spend hours in a doctors waiting room.  I kept thinking we should be at home enjoying the last day of the school holidays as a family - not waiting for blood tests while on our way to rehab.  At least the results showed his kidneys are continuing to head in the right direction (I think his creatinine was 370 ish).

Murray is now an inpatient at Mt Wilga rehab hospital.  I don't think he is in love with the idea of having to stay there.  It was really hard to leave him - especially as he still doesn't fully understand what happened to him or why he needs to be there.  Again - it's for his own good - but I still feel like the bad cop!

This is turning into a whinge isn't it?

Unfortunately I'm not done yet.

When I got home Emma tripped over Ashlea and landed on her belly - where the kidney is!!!  She seems  fine and I am trying not to worry but part of me is tempted to drag her out of bed and rush to the emergency department 'just in case'.  I feel guilty for not taking her in, but I just couldn't face it.  (Kidney friends please feel free to tell me if I should take her).

As usual I couldn't get through days like today without all your support.  Today alone I have had a friend come at the crack of dawn to sit with Murray and the girls while I took Ashlea to bloods, another friend drop in to visit Murray, a friend research respite options for me, Grandma come and watch the 3 girls all day, another friend drop in with a lamb roast for dinner, several friends ring to ask how things are going and another 2 friends bring around a load of groceries.  THANK YOU ALL.  It makes days like this survivable.

Thursday, April 19, 2012

T +21 3 Weeks Today

Pretty much at exactly this time 3 weeks ago I was excitedly rushing in to see Ashlea after hearing the words I had waited 5 years to hear - the kidney is in and it's working!

I feel like the excitement of that day has been tarnished by what has happened since.  I am so glad Murray came home from hospital yesterday as I know there was another kidney transplant at the children's hospital today.  I really didn't want to have to bump into the other donor on the ward (or the recipient for that matter).  Don't get me wrong - I don't want them to have a bad outcome, but there is a little part of me that would be wildly envious if I had to see them having their good outcome.

That should have been us!!!

Instead Murray will head off to rehab tomorrow.  I have no idea how long he will be there for.  I have no idea how I am even going to get him there!  I have to take Ashlea for bloods at the kids hospital in the morning.  Then I have to come back and swap Ashlea for Murray and take him for bloods back at the adults hospital (no I can't take them both together - too much walking for Murray and too much infection risk for Ashlea).  Then after all that is done I have to get Murray up to the rehab place in a timely fashion.  Anyone perfected cloning yet??

On a more positive note we have enjoyed a quiet day at home together just pottering around the house.  Murray is still pretty tired but the girls have engaged him in some incidental therapy by dragging him outside to watch them ride their bikes and by forcing him to be one of the 'students' in their 'school'.  I think he also got to be a Masterchef judge as well.  This is why he needs to be at home!!

Wednesday, April 18, 2012

T+20 He's Home!!!

We are finally all under the one roof - and all in our jammies - just the way we like it!

Thank you to all of you who have helped us through the hospital phase of this journey - we couldn't have done it without you.  Seriously - there is absolutely no way we could have done it without all the help, prayers, phone calls, meals, visits - you name it - support we've had.

I am sure we will continue to rely on all of you through this next phase too - especially since I may have promised the OT that I wouldn't leave Murray unsupervised for a minute while he was waiting to go to rehab.

It is so lovely to all be at home together again - it was exactly 3 weeks ago that we were last together like this.  Never could we have imagined what was about to unfold!

T +20 Rehab Plan

Murray will be going to Mt Wilga (a private rehab hospital) for rehab on either Friday or Monday. In the meantime I am trying to get him home. Today!!

We are just waiting on doctors letters and other paperwork and then hopefully we can get out!

Hopefully we can update from home tonight!!

Tuesday, April 17, 2012

T +19 Stent Removal

Ashlea had day surgery today to have her 'pig tail stent' removed and to have her eyes examined.  It all went very smoothly - the stent is out and her eyes are about the same as last time they checked them.  The only hiccup was that I forgot to ask for a pre-med for Ashlea - which meant she went to sleep screaming blue murder - and of course woke up the same way.  I can't say that all the steroids in her system helped her to calm down quickly either!  The photo is from just before she woke up and started howling.

On the whole she was very good though.  It was interesting to watch other children in the recovery ward who are obviously not 'frequent flyers' at the hospital - they would have a screaming meltdown over the removal of their IV whereas Ashlea just patiently held her arm out and watched while the nurse removed it. While I am very proud of her I'm also a little sad that she is so experienced at medical procedures.  She knows there is much worse than a blood test or IV.

Murray had a quiet day (I think - I wasn't able to be there for long due to Ashlea's procedure). His kidney function is improved again (creatinine 480 and urea 20) and the rehab bigwig is coming around to see him tomorrow - hopefully she will be able to tell us WHERE he can go for rehab and WHEN.  If it is not going to be in the next couple of days I will try and bust him out of there tomorrow :)

Monday, April 16, 2012

T +18

Ashlea has had another good day.  Her Tac level is back down to 5 today (where it should be) and her creatinine still hovers between 25 and 30.  She is having a big day tomorrow though - bloods and clinic in the morning and then stent removal in the afternoon.  When the surgeons put her new kidney in they also put a stent into the ureter to keep the wee flowing out so it doesn't reflux back into the kidney.  The stent only stays in for a few weeks so it is now time for it to come out - and yes that does mean another general anaesthetic but hopefully just an afternoon in hospital.  Although maybe I should double check that???

Murray's numbers are creeping down ever so slowly.  Today's creatine was 548 and urea 23 - slowly, slowly they are heading in the right direction.  Otherwise not much is happening in the hospital.  I have asked his team to really push for rehab tomorrow and have told them that if there is going to be a delay of a week or two before he can get in then he should come home in the meantime.  It is becoming unhelpful for him to be in hospital where there is no physical or mental stimulation.  The hospital physio has said he is not yet safe to come home from hospital - but sitting around in hospital doing nothing is hardly helping him get back on his feet for coming home!

Besides if he is at home I can boss nurse him back to good health :)

Sunday, April 15, 2012

T +17 Chipmunk Cheeks

Miss Ashlea is doing well today.  Her creatinine is 26 but her tac level is up to 19 (it should be between 5 and 8 I think - it was 11.3 yesterday).  Please pray as we continue to juggle her medications and the potential for tacrolimus toxicity.  I don't know how much detail to give you as I don't want to gross you all out, but the cold hard fact is that she has had diarrhoea since the transplant due to one of the other immune suppressants - so if you want to pray for all the gory details please pray that that improves as it is also contributing to the high tacrolimus levels.  And to a very sore bot :(

Murray's creatinine is 553 and his urea 25 which is a slight improvement.  We're hoping his kidney has turned the corner and that his levels will now start to come down.

Ashlea is starting to develop chipmunk cheeks from the steroids she is on - for those who have had kids on steroids you will recognise the cheeks.  Before the transplant I was worried about how the steroids would effect her - especially physically.  It's not a big deal that she has chipmunk cheeks because it means she has her new kidney and the steroids are helping to protect it, but there is a little part of me that is reminded that it is yet another point of difference between her and Audrey (this is probably only something ID twin mums can relate to!).

Playing God

In the past I have written about doctors who 'play God' by determining who can and can't get kidney transplants - or other medical treatment.

What if it isn't the doctors that are 'playing God' though?  What if it is us?

Has 'all this' happened because we have intervened and 'played God' too many times???

Did we play God way back in the beginning by using IVF to have our children?  Should we have accepted childlessness as 'God's plan for us'?

Did we play God by telling the doctors we wanted Ashlea to be resuscitated at birth?  Should we have 'let nature take it's course?'

Did we play God by insisting that Ashlea have a kidney transplant?  Should we have opted for dialysis?  Should we have opted for no treatment at all?

How much has our interfering lead to this point?

We have intervened so many times.  As well as what I've already mentioned both Ashlea and Murray have been 'brought back from the brink' by teams of doctors - a good thing - but definitely more interference.

Have we interfered too much?

This post may sound a tad crazy, but given the circumstances I think I'm allowed a few crazy musings.

I know that God is the one who is really in control of all things - but I still can't help wonder how much (if at all) our interfering to ensure that we got what we wanted - children - live ones - with working kidneys - has helped lead to this point.

Has our interfering lead to this?

Are we partly to blame?

Saturday, April 14, 2012

Another Thank You

I know it is dangerous to single some people out for thanks and not others because I may end up missing out on thanking a crucial person, but I have another group of internet supporters I need to thank today - this time it is my Kidney Mum Friends.  While my CP Mum Friends 'get it' when it comes to disability, these mums get it when it comes to kidneys!

Thank you all for your generous gift!

Thank you also to all the people at church who keep turning up with meals (yesterdays was a lamb roast) or to mow lawns or fold laundry.  I don't even really know many of you that well yet so thank you so much for your support.  And thank you particularly to those who have visited - particularly on some of the darker days - it is hard to convey how much a visit like that means given the circumstances.

To everyone who has offered support and help that I haven't gotten back to - it's not because I am ignoring you - it's just that I am really only planning a couple of days in advance at the moment so it ends up being quite random who ends up helping.  Whoever happens to be around right when I need help usually ends up getting the job!

THANK YOU ALL.  There is really no way we could get through something like this without your help.

T +16 All Quiet

All is quiet today and I have nothing to report to you all, but I thought if I didn't at least tell you everything is quiet you would worry that something bad may have happened!

So - everything is quiet.  Murray's kidney numbers are stable again today otherwise there is nothing to report as weekends in the hospital are incredibly quiet.

Ashlea's creatinine was 27 again today although her tacrolimus (drug) level is a bit high which worries me as I don't really understand what it all means yet.  It seems that there is a fine line between 'just enough' tacrolimus and it becoming toxic.  My kidney friends may be able to elaborate!  This is why we have to go for daily blood tests - to make sure everything is just right.

Hopefully tomorrow's update will be equally as uneventful!

Friday, April 13, 2012

Has she lost it?

My fabulous friend bought me this fabulous hat from the Easter Show.  I LOVE it and fully intend to wear it in winter while doing the school drop off.  I think with all we've been through over the last couple of weeks I'm entitled to wear a kermit on my head if I so choose.  

T +15 Rehab...All the cool kids are doing it

Murray has had quite a busy day today with various teams coming to assess him to determine what the plan is now that he is almost medically well enough to be discharged.  At this stage it looks like he will be heading to rehab next week as it would not be safe for him to come home straight from hospital.  He is too unsteady on his feet and would also benefit from some cognitive rehabilitation.  Of course things happening slowly in the hospital system but hopefully we can get him transferred early next week.

He had some visitors come and take over his bed today which made everyone happy:

Ashlea is still going well.  Her creatinine today was 29 and all her other kidney numbers were good.  Her drug levels are constantly being adjusted but that is all normal after a transplant - they need to keep the immune suppression at a certain level to protect her kidney which is why they check her daily with blood tests.

The other big thing on the horizon is that Aunty Carolin is going back to work next week. PANIC!!! How we will cope???  I'm sure I will come up with a plan over the weekend but for now can everyone give Aunty Carolin a big cyberspace pat on the back for taking the last couple of weeks off to look after the house and children - we really couldn't have kept things running smoothly at home for Emma and Audrey without her help!

Thursday, April 12, 2012

Special Thanks

So many people have helped / are helping us through this extremely trying time - I hope to be able to thank all of you in time.  Today though I need to say a special thanks to my CP Mummy Friends - many of whom I haven't even met in real life.  Some of us are 'real life' friends - others I only know through the blogosphere but they are a great, supportive bunch of women who really 'get' what it is like to raise a child with a disability.  

Today when I went to check the mail there was a lovely surprise - a bunch of vouchers for a cleaning franchise!!  Thank you all so much - they will be well used!!!

T +14 Kidney Improvement

I haven't been over to see Murray yet (as I have been enjoying my well deserved cup of tea), but when I spoke to the nurse this morning they said his kidney numbers were not just stable today - they were actually improved this morning (creatinine 578 and urea 31.3 down from 600 and 40 yesterday).  So improved that they took his vas cath (dialysis plumbing) out today!  They are very hopeful that this is the beginning of his kidney kicking in and starting to work on its own.

They are even starting the use the H* word in his presence!  It would be lovely to have him home - it feels like a long two weeks since he first went into hospital.  For Ashlea though I can't believe it has only been 2 weeks - she is doing so well.  Do you remember her scar from Day 1 after surgery?  Have a look at it now:

Thanks for all the prayers and well wishes - I am very hopeful we will all be home under the same roof very soon!

Wednesday, April 11, 2012

T +13 Progress!

Murray has had a quiet day in hospital.  His kidney function remained stable today so the doctors are hoping his kidney is turning the corner and about to start improving.  I won't believe it until I see a few days of stable numbers but hopefully we are on the right track.

There was a far more significant sign of progress today though. Rather than getting the nurse to call me in the morning to find out what is going on, today Murray got her to call me with his coffee order for the day.  Surely that is a healthy sign of progress. 

And he unlocked his phone for me.  Now the tricky part though - what to tell his boss???

Ashlea continues to sail along smoothly.  Gee it feels strange to write that about her!  Her kidney function is beautiful and her scar is healing so well. 

Even though I feel a bit guilty about it I am having a quiet day tomorrow - only 2 hospital trips rather than 3.  I am looking forward to having the time to drink a cup of tea out of a tea cup rather than out of my travel mug while I am running from location to location.  It's the little things right?  (Big thanks to my bible study ladies for giving me the travel mug though - it gets used

Tuesday, April 10, 2012

T +12 Too tired to update...

OK this new schedule is punishing.

I'm tired.

The summary for the day is that both patients have had a good day.  Ashlea's blood work is still great (her creatinine seems to have settled at around 28) and she is happy to be home.  She does not like the daily blood tests though.  Can't say I do either.

I have no idea what Murray's creatinine was today - it would have been lower than yesterday because of the dialysis and hopefully it will be lower again tomorrow rather than increasing again.  He is now out of High Dependency and back on the ward.  Each little step forward is a step closer to coming home.

Got to go to bed - no sleep ins for me for at least another 26 days...

Monday, April 9, 2012

T +11 The New Routine

Day 1 of the new routine.  We survived.  I hate to admit it but it is a wee bit exhausting and I'm not quite sure how I'll keep it up.  Driving to and from the hospital 3 times a day might just be the finish of me.

Ashlea's new medication routine alone is something to behold.  It is a little alarming that I have to glove up when handling the drugs and then dispose of the syringes and gloves in the special cytotoxic waste bin - and yet I am allowed to freely give them to my child!

Murray had dialysis today.  His creatinine was similar to yesterday (686 I think) but his urea was high at 42.  He is now no longer requiring oxygen and I think has finished the last of his IV antibiotics which is good - hopefully he can get out of HDU soon and onto the regular ward. Please pray for him as he was feeling quite sick tonight.  For those who know me and my vomit phobia you will not be surprised to hear that I headed for the hills.  Sit by your bed in ICU?  No worries. Hold your hand during dialysis?  Sure, no problem.  Bring out the barf bags though and I'm out the door.  Poor Murray - hopefully with his patchy memory he won't remember that bit.

Please continue to pray for good health for Ashlea.  I am super paranoid that I will transfer hospital germs from Murray to her (he is in a shared room where half the other people are on contact precautions).  Also I can hear one of the other girls coughing at the moment.  Please pray she stays well!

Thanks again for all your help and ongoing support - especially those who are doing the lion's share of the work - Aunty Carolin, Super Neighbour Kate and Grandma spring to mind!  It is really appreciated and there is no way we could get through this without you.

Seems so long ago

Now that Ashlea and I are home from hospital I am able to update you from my regular computer.  When I turned it on today I opened Lightroom and by default it opened to the last picture I had looked at.

It was this picture of Murray with Emma and Audrey:

I forgot that I had taken these shots.  I often take photos before major events like surgery 'just in case something bad happens'.  I am always on my guard 'in case something bad happens' to Ashlea.  I never expected it to happen to Murray.

I feel like I have been deliberately vague in my posts about Murray and his recovery.  Partly to protect his privacy but partly also because it is so hard to believe it is really happening.

When Murray aspirated into his lungs he suffered a period of hypoxia (lack of oxygen).  That is why his kidney isn't working.  The doctors are hopeful that in a couple of weeks the kidney will kick in and start working on its own.

His brain also suffered during the hypoxic episode.  As far as I can tell the main effect appears at this stage to have been to his short term memory.  The doctors say it can take 6 months for the brain to recover - which means it will be 6 months until we know if he has made / is able to make a full recovery.  Every day he makes small steps forward which is always encouraging, but it is going to be a long slow road back.

I also found this shot of him and Ashlea:

It was such a shock to see these images appear on my screen.  It seems like a life time ago.

I wonder if it will be that same Murray that comes home from hospital?

Sunday, April 8, 2012

T +10 She's Home!

This morning as I was packing up our things Ashlea said to me "I think it's time to go home".

Never a truer word spoken!

Within half an hour of being at home she was back in her favourite spot:

This is exactly why we need to be at home.  In hospital she refused to stand up and didn't even like sitting up in her wheelchair.  She would say "I need to lie in my bed" every time we got her up.  Now that she is home she will move around a lot more without realising it - which will be great for her recovery.  It's a good angle for viewing Mummy's hairdressing skills too :)

Please keep praying for her even though she is home from hospital.  Now that we are out in the big wide world she will start to be exposed to things.  She felt a little warm tonight at bedtime so I really hope she isn't brewing something already.  I unpacked our hospital stuff - I have no intention of going back any time soon!

Tomorrow our new routine of daily blood tests will start.  We have to be at pathology by 8:30am. Every day.  I also want to try and visit Murray twice a day like I have been while we were in hospital.  I'm not sure there are going to be enough hours in the day but we will give it a go!

Saturday, April 7, 2012

T +9 Update

Today has been a quiet day again for my patients but a busy day for me running up and down the long corridor between the two hospitals.

Murray is a little better again today.  His creatinine is still high (630) but they didn't think dialysis was needed today.  It will be checked again tomorrrow morning. 

Ashlea has had a great day.  She is only 50ml away from being on full feeds and has managed with only paracetamol for pain relief today...which all means....


We are most likely going to come home tomorrow.  The hospital have said we can stay for the weekend if we want seeing as it is easier to visit Murray but Ashlea is at the point where she needs to be at home.  If we stay in hospital there is a good chance she will pick up a bug of some sort and if we are at home Ashlea will naturally be more mobile which will help her recovery.

So the plan is to bust out of here tomorrow morning.  Thank you to everyone who has come to visit us - especially those who have come to visit and then found themselves on Ashlea duty while I have gone to visit Murray.  Thank you to Aunty Carolin for being on Emma and Audrey duty for the last 9 days. 

I'm not sure how much longer Murray will be in hospital.  I was able to spend a fair bit of time with him today which was nice (his ward has very strict visiting hours) although I haven't yet figured out how I am going to juggle visiting him and looking after everyone at home!  I'm sure we'll work it out - most likely with all of your help - so thanks in advance!

* I know - I shouldn't have said it out loud.  Who wants to bet Ashlea will come down with something overnight???

Friday, April 6, 2012

T +8 Evening

Thank you all for your support after this morning's post - it means a lot.  When I saw Murray today he seemed a little better than yesterday so I am feeling more hopeful tonight that he is making progress.  His kidney function is still poor but he didn't require dialysis today.  They will do bloods at 6am (seriously how wrong is that) and then decide after that if he needs it.

Ashlea has had a great day.  She is almost up to full feeds and has only had two doses of pain medications today.  This evening I was hoping she would go to sleep so I could duck back over and visit Murray.  Of course she didn't like that plan so I decided that instead we would both duck over for a quick visit with Dad - their first time seeing each other in 8 days.

T +8 The What Ifs

The last 8 days - the last 6 in particular - have been unbelievable.

Who could believe something like this would happen?  And why to us?  WHY TO US??? Haven't we already had enough crap to deal with?

Murray is one of the good guys.  He is a good and kind man.  This was a good and kind thing that he did - he gave his daughter a kidney.  He gave her life.  And in doing so he risked his own.

This morning I have a case of the 'what if's'.

What if his kidney doesn't recover?

What if his brain doesn't recover?

What if I don't get my husband back the way he was before?

What if I end up having to care for him as well?

What if?

Why God? 

What are you doing God???

I know it's too early to panic.  Murray has only just woken up from his sedation and there is still plenty of time for him to recover and his doctors are still hopeful of a good recovery - but would any of you be able to walk the same path as me and not think 'what if'.

I know that God is still in control of all things - including this - but seriously, I have no idea what He is doing.  Hopefully in time I will be able to look back and see God's good plan in all of this, but right now it is very hard to see.

Please keep praying - for Murray to make a full recovery.  For Ashlea to continue in her great recovery.  And for me to have the strength to keep caring for both of them.

Thursday, April 5, 2012

T +7 Evening

Today has been a quiet day for both my patients.

Murray is stable and has been moved out of ICU into HDU (High Dependency).  His lungs are recovering but his kidney still needs a bit more time.  He will have dialysis tomorrow - I think today's creatinine was 480.

Ashlea has had a quiet day.  Her creatinine was 26 again this morning and her doctors are very happy with her.  She is almost ready to come home - she just has to tolerate all her feeds and no longer need the good pain drugs.

I'm sorry to tell you all though that I had to chop Ashlea's hair - and before you all get upset with me I had trouble even getting the scissors through it - let  alone a comb!  We tried conditioner, moroccan oil and detangler all applied in a greasy cocktail - to no avail.  This is what I chopped out!  And yes - I have asked a hairdresser friend to come and give her a proper hair cut!!

Thanks for your ongoing support - there is no way we could get through this without it.  Thank you for all the cards, texts, emails, gifts and visits.  A big thank you for all the chocolate - I have it coming out my ears!!

Wednesday, April 4, 2012

T +6 Evening

A good day all round.

Murray is still in ICU on oxygen but he is breathing on his own.  He was having dialysis today (his creatinine had come down to 395 by lunch) but then 'something' clotted and they had to turn the machine off.  If his creatinine is still coming down overnight they will remove the lines and take him off altogether, but if his creatinine goes up they will restart the machine.

Even though Murray is awake and able to talk he is still very groggy from all the sedation.  In spite of all this he has (of course) had something to eat this evening.  Talk about a robust appetite.

Emma and Audrey came and saw him for a quick visit this afternoon which was nice.

Ashlea has had a good day.  We have been able to manage her pain with oral pain medications  and we are trying to push her up to full feeds.  She has had some gagging but on the whole hasn't been too bad.

We got her out of bed today and gave her a bath.  We tried to detangle the hair.  It didn't work.  I haven't yet  chopped it all off but I don't think I will have any other option.

And big thanks to Jenny and family for sending Ashlea this musical card - it kept her entertained all morning. The nurses not so much!

T +6

The breathing tube is out!!!

Murray is awake and breathing on his own although still very drowsy and he has no idea what has happened.

He is still on dialysis - his creatinine this morning was 500 and his urea 25 so that is still continuing.

Ashlea is good. She had a kidney ultrasound this morning and after her lunch time medication today she is going to have a bath. Her hair is totally matted - I fear I may have to chop it all off - i will let you know how that goes!'

Thank you all for praying and supporting us - I can't wait to show Murray all the messages of support once he is up to it.

Tuesday, April 3, 2012

T +5 Evening

Murray's condition remains unchanged this evening.  He is still sedated and on the ventilator and they commenced dialysis this evening.  His creatinine before dialysis was 660 and his urea 27.  Hopefully there will be some improvement by tomorrow morning.

Ashlea has also had a stable day.  She now has all her lines and attachments removed.  She is struggling to tolerate her feeds though so I would not be surprised if she has acquired a new peripheral IV by morning (for fluids). 

Her pain is more under control today - although as the time gets closer to her being due her next dose of pain relief she gets more and more miserable.  Within about 20-30 minutes of receiving the meds she is much perkier.  MUCH perkier.  Tonight after her dose she was serenading everyone by singing into her syringe microcphone.

Thanks for your continued support - we couldn't do this without it!

T +5 Midday


Murray is still intubated and on the ventilator. Apparently his chest Xray looked better again today so that is good.

The bad news is that his remaining kidney is still not working well. It is making urine but today his creatinine is 630 and his urea 27.5. They are planning on dialyzing him this afternoon.

Ashlea is doing well. Her creatinine is 28 and urea 5.6. She is struggling with her feeds and has had a lot of nausea and gagging as well as some pain so we are still managing that. Her catheter is coming out today but the central line will stay in a bit longer until we get her feeding sorted (feeding always takes ages to sort out with her).

Monday, April 2, 2012

Ashlea Video

Carolin made a little video of Ashlea when she visited today...

T +4 Evening

A good day all round.

Ashlea has been comfortable all day even though the epidural has been removed.  She has done well on oral feeds (and by that I mean PEG) rather than IV, although this evening she has been gagging a bit.  Establishing feeds is always tricky with her.  On the agenda tomorrow is the removal of her central line and urinary catheter.  Hopefully she will be able to progress to full feeds but it usually takes awhile with her.

Murray has been very stable.  His kidney ultrasound showed no damage to his kidney and his creatinine this evening was very similar to this morning.  We are hoping it has stabilised and will now start to decrease.  Hopefully he will be extubated tomorrow (have his breathing tube removed).  I am sure he will be very happy about that as he is less sedated now and tries to pull it out himself - as a result they have had to restrain him.

I won't updae until after I have been over to see him tomorrow but hopefully when I do I will be able to tell you he is breathing on his own.

T +4 Midday

Sorry for not updating earlier - I've heard rumours that some of you are getting twitchy waiting for the latest news!

Ashlea is doing well this morning.  She has had her epidural removed but they gave her an infusion of morphine through it before taking it out (the epidural is an infection risk which is why it can't stay in too long).  The morphine should last 24 hours.  She is quite itchy from it but otherwise seems comfortable.  Her creatinine today is 27 and her urea 5.  We are trying to move onto oral feeds and pain meds so that we can get her central line out tomorrow as that is also an infection risk.  She is very comfortable and chirpy and made all the doctors sing Old MacDonald with her this morning.

Murray has had a stable night.  They are still waiting for his kidney function to improve before they start weaning his ventilation.  His creatinine is 570 and his urea 22 but the kidney is making urine so for the time being they are going to watch and wait and see if the creatinine starts to come down on its own.  They are reluctant to do dialysis as that can make the kidney even more sluggish to start working again.  He is still requiring 40% oxygen and his ventilation pressures and peep are both 10 (I'm only writing this down so I can google what it means at a later date - a much later date).  Murray is having a kidney ultrasound this afternoon otherwise no changes to his care are planned for today.

I got to sit with him for a couple of hours this morning and I asked him to squeeze my hand if he could hear me talking - which he did.  I then asked him to squeeze my hand if he knew it was me - which he also did.   I know we still have a long road ahead but I am more hopeful now that he is 'still in there'.

That's all the news for now - thank you all for your ongoing support - it means a lot.  I have a random request for you all though.  Does anyone know how to break through an iphone  password?  I don't know the password on Murray's phone and there are a couple of people who I need to contact and I can't get their details out of his phone.  Thanks!!

Sunday, April 1, 2012

T +3 Evening

Today has been much quieter than yesterday.

Murray has remained stable all day - no real changes from this morning.  His lung function is stable and he probably has another day or so on the ventilator before they wean him.  The big concern now is that his kidney function has deteriorated and we have to wait and see if his kidney recovers on its own.  Once his kidney function improves they can start weaning the ventilator.  Is this sounding familiar to anyone who has been following our story from the beginning???

The doctors don't think his kidney function has deteriorated just because he gave one kidney away - it has deteriorated because of the lack of oxygen and low blood pressure when he had the aspiration yesterday morning.  He seems to have swapped kidney function with Ashlea - he now has a creatinnine of 500 and she has one of 28.  He even has the same cause of kidney failure - hypoxia - lack of oxygen / blood to the kidneys.

Ashlea is quite chirpy this evening.  She was very miserable around the middle of the day.  She was in a fair amount of pain and the oral pain meds were causing nausea.  She also had a lot of fluid on board and was struggling to breath, having desats and needing some oxygen.  The doctors restarted her epidural and gave her some more diuretics and now she is much more comfortable.  More than comfortable in fact - she is very chirpy and happily playing on her ipad. 

Thanks again for all your support.  To everyone who is praying and thinking of us, sending us messages, visiting, dropping off meals (and easter eggs) - THANK YOU.  It really means a lot and there is no way we could get through all of this without you!

T +3 Morning

Thank you all for your continued support.

Murray has had a good night in the ICU.  He is now requiring no blood pressure medication at all and his oxygen levels are a lot better.  I haven't yet spoken to the doctor but his overnight nurse said the plan was to start trying to wean him from the ventilator today.

Miss Ashlea is a little miserable this morning.  She is still very fluid overloaded which is making it hard for her to breath.  They have decided to turn her epidural off in the hope that she can be more mobile and try and shift some of the fluid.  The problem with that is that her pain will be a lot worse today.  At the moment we are trying to manage her pain with oral medications - which means we also have to manage her nausea from those pain meds.

Overall though she is doing well.  Her kidney function is spectacularly good - her creatinine is 28.  28!!!

The plan with Ashlea is to try and get her onto all oral feeds and pain medications so that she will be more free to move around and clear the fluid that has built up in her tissues.  She is quite puffy and uncomfortable and her lungs have quite a bit of fluid in them.  They have given diuretics to help shift some of the fluid - the problem is they only work for a short time.

We are hoping to sit her up later today and if she is up to it to possibly go for a little walk in the wheelchair.  This is where having CP as well as kidney failure really sux - she needs to be mobile to help recover from the surgery but her mobility is severely affected by her CP.

Ashlea's lovely preschool teacher from last year is going to come and sit with her this morning so I can go and visit Murray.  Carolin is bringing the girls over to visit Ashlea this afternoon.  I really don't know whether to let them see Murray.  Emma in particular is prone to anxiety so I don't know whether it would be helpful for her to see him like that or to wait until he is a bit better.  Any thoughts???  A good friend who has done the ICU journey has given me some good suggestions but I thought I'd see what the general consensus is.  At the moment Emma and Audrey have no idea just how sick Murray is.  I really don't know how much to tell them.

Thanks again for all the prayers and well wishes.  I will update you all again this evening.