Saturday, March 31, 2012
The good news is that Murray is much improved this evening!
This morning he was found unconcious on the ward at 6am where he was intubated and rushed down to ICU. He had a GCS of 4 (I don't really know what that means other than that it isn't good). He was on 100% oxygen but only saturating in the 70's and was having issues with low blood pressure and his remaining kidney. We don't know 100% what happened but he appears to have aspirated into his lungs while asleep.
I am very happy to report that this evening even though he is still very much in need of the ventilator he is on far less oxygen (40% I think) and saturating in the 90's. He is also requiring less medication for his blood pressure.
The doctors turned his sedation down this evening to see if he would wake up and respond and he was able to respond to his name and follow some basic commands. He looked quite freaked out when he woke up - but hopefully he'll have no memory of that - and hopefully it means he is aware of his surroundings.
They are turning the sedation back up for the night so that he has a good rest - he is still very ventilator dependent and without the sedation he would try to pull the tube out.
So - all in all he is in a much better state than this morning. This morning they were saying that if his breathing didn't improve they might need to put him on the oscillating ventilator or even on ECMO (which is like bypass). Now they are talking about weaning his ventilation if he continues to impove at this rate. The doctors are also very hopeful that he has suffered no brain injury. Of course it is still early days, but he is heading in the right direction.
Miss Ashlea is doing well. She has had a couple of doses of a diuretic to make her wee and has been a bit brighter than yesterday. She is back to playing her ipad so that is a good sign. They are going to try and remove her epidural tomorrow and move to oral pain medications. Hopefully this will control her pain well enough as she is quite itchy from some of the epidural drugs. Otherwise she is stable and her renal doctors are happy with her progress. The tweaking of fluids and medications will continue for many months and is not out of the ordinary post-transplant.
Thank you all so much for praying and supporting us through this - I can't tell you how much it means to know so many of you are praying for us, thinking of us and standing with us through this. A huge special thanks to Murray's best mate Dave who has been here the whole day - I REALLY couldn't have got through the day without him.
Doctors are saying he is very sick. I know from past experience that that is code for 'it's bad'. Has blood pressure problems as well as kidney and lung problems.
The reason I can pass this information on to you all is because I am still waiting outside ICU - they haven't let me in to see him yet. And you all know how good I am at waiting!!
19 Chapel Lane
Ashlea isn't weeing as much as she should be either but the doctors haven't seen her yet. She is really puffed up with fluid.
Am typing this as I rush over to the adult side.
Will update when I know more.
Friday, March 30, 2012
Ashlea has had some pain today although it is under control at the moment. She has told me in a sad little voice a number of times today "I want to go home".
Murray is doing well. Still quite off his face with pain relief but has had a couple of visitors bearing good coffee so that has helped. Ashlea seems to have finally fallen asleep so I am going to try and duck over and visit him now.
Please keep praying - we still have a big recovery ahead of us.
At the moment the main issues are pain control for both Ashlea and Murray. Ashlea is having a few issues with fluid balance and with her lines. Both her IV's have blocked and been removed and the central line seems to be blocked too. The nurse is trying to revive it as I type as it needs to last a couple more days.
Also Ashlea has a little bit of 'cloudiness' in her left lung - from having a big surgery and being immobile. Please pray that that will clear up and not turn into anything nasty.
She will have bloods again in the morning and they will start to not only look at kidney function but also the levels of her immune suppressants. It is a great juggling act and things are being tweaked by the hour - although the doctors assure me this is all a normal part of the process.
I took a photo of Ashlea's scar today - it is massive. No wonder she is in pain. It's not for the faint of heart though so look away now if you're eating your dinner!
Well, guess whose creatinine is 46???
On Tuesday it was 475 - her highest ever reading was 505.
Now it is 46.
Wow. That is one good kidney she's got there!
Ashlea has had a good night although has had some pain this morning. She has just had an extra dose of pain relief and seems more settled now.
We are moving out of ICU to the ward some time today.
Murray is doing well. He has been quite off his face from the pain killers - but I think he's earned that!
Thursday, March 29, 2012
The kidney is in!!
It's making wee!!!
She was stable throughout the entire procedure. They were able to put the kidney on the side rather than in the middle of her tummy. They didn't need to remove her own kidney to make room for the new one.
She did need a unit of blood during the operation.
She is extubated and has an epidural for pain relief.
Going in to see her now!!
The kidney is IN but still has to be attached to the ureter. Hopefully when she comes out in a couple of hours I will be able to report that not only is the kidney in but it is making urine.
Still an hour or so of surgery to go but so far so good.
He is even disappointed that he's not allowed to eat dinner tonight as he has to have fluids for another day. All he has talked about since getting back to the ward is food :)
Surgery was uncomplicated and the kidney looked good apparently - they should be starting to sew it in right about now.
Wednesday, March 28, 2012
Well. Tomorrow is the big day.
And guess what? I have no 'final thoughts'. I still can't believe it's happening. Tomorrow!
For those who want to follow in detail I will be updating the blog regularly throughout the day as I can do that easily from my phone. My sister will then post any updates to facebook for those who only follow from there.
While I'm typing this Ashlea is outside playing with Emma and Audrey. I can't bear to interrupt them even though it's bath time. It's a last little 'normal', blissful moment before the operation.
Tuesday, March 27, 2012
I also signed Ashlea's consent forms.
Is it weird that even now - 2 days from surgery - I still can't believe this is really happening???
We went over the details of what will happen on the day.
Murray needs to arrive at the hospital at 7am. He will go into surgery around 9am and be out around lunch time.
Ashlea needs to arrive at the hospital at 8:30. She will have two infusions of immune suppressants before surgery begins and will then go in at around midday and won't be out until early evening - around 6 or 7pm.
I was very glad to discover that the anaesthetist is a friend from our old church. It will be nice to see a familiar face on the day. We have another friend from our old church who is a consultant in the PICU and one of the surgeons goes to church with my sister. It will be nice to have people who know Ashlea - or at least know her story - caring for her on the day.
For those who like the nitty gritty surgical details here they are:
Murray has two arteries to his kidney. One is the main artery, the other is a very small artery that supplies only 5% of his kidney. The surgeons are thinking this tiny artery will be too difficult to attach (it will take a long time and probably clot off so not worth the extra time under anaesthetic) so they are thinking they will not sew it in - meaning Ashlea will automatically lose that small portion of Murray's kidney.
They still aren't sure exactly where they're going to put the kidney - Murray's kidney will be quite big so they aren't sure if they will be able to put it in the side of her abdomen like they were going to with mine or if they'll have to do a big cut down the middle of her belly. They will make that decision once they've seen the kidney on the day.
Ashlea will have an epidural for pain relief for the first few days and then will be allowed to get out of bed on the Monday or Tuesday. Our hospital physio will help Ashlea with that. Did I mention she is also our anaesthetist's wife??? I have my people all over the hospital :)
Ashlea started on her immune suppressants tonight. The pharmacist told me I should wear gloves when drawing them up and be careful not get any on my skin. But apparently it is OK to give it to my 5 year old! I hated giving it to her - it almost felt like I was poisoning her by knocking out her immune system - but it is necessary to protect her new kidney.
Thanks again for all your prayers, phone calls, texts and emails of support. I had intended to respond to each of you individually but I'm thinking that probably isn't likely to happen now. And please keep praying - I can't believe that this time in 2 days they will both be out of surgery!
Monday, March 26, 2012
It's a very strange time at the moment. We are still leading our ordinary, everyday lives - making lunches, doing the school run, buying groceries etc and yet we have this huge operation looming in just 3 days. It's becoming harder and harder to do the every day things - in a way I have already mentally shut myself off from those things as I have started to focus in on getting through the transplant.
My mind is well and truly in the 'transplant zone' now.
A few people have asked me how I am feeling in the lead up. I'm afraid I really can't answer that question at the moment. Part of my mental preparation for the transplant has been to disconnect from how I feel about what is happening. I can't feel all the emotions that go with the big scary operation AND get through it in one piece - so how I feel about it will have to wait until later.
For now I'm just trying to take things one day at a time.
Sunday, March 25, 2012
Thank you all for your ongoing support. It really does make a huge difference knowing we are not going through this alone. Knowing that so many people are standing beside us, praying, thinking of us and hoping for a great outcome for Ashlea and Murray really means a lot.
It is amazing to think of how many people are supporting our little Ashlea. Apparently up to 100 medical personnel can be involved in just one kidney transplant. How amazing and humbling to think of all those people working so hard for Ashlea to get her kidney. And then there are the hundreds of people (that's all of you) praying and thinking of us, hoping with us for a successful transplant. Thank you all.
We couldn't do this without you!!
Saturday, March 24, 2012
Emma has woken up today with a cold. The kind of cold that involves lots of violent sneezing - thus ensuring the germs get spread far and wide.
I am feeling like I might be getting a cold too.
So far Murray and Ashlea are fine.
We have been keeping Ashlea away from her sisters all day - which feels a little mean but has to be done for now. I may have also put another hole in the ozone layer with my enthusiastic use of the Glen 20.
We are all so ready for this operation to happen this time - we REALLY don't want it cancelled because someone has a cold!
For those who pray - please pray for Murray and Ashlea to stay healthy!!
Friday, March 23, 2012
Her blood work was pretty good - her creatinine was 455 and her urea 15.
The doctor was very happy with Ashlea and had good news for us too. The full and final cross match results are back and they are ALL NEGATIVE.
All the tests have been passed. All the preparations have been made. Assuming Ashlea and Murray stay well we are all systems go for next Thursday.
I can't believe how close it is now.
Hopefully this time next week I will be able to tell you that Ashlea's creatinine is <100.
Wednesday, March 21, 2012
8 Days to go...
Now that we are getting close to the transplant many people have asked me what they can do to support us over the next few weeks and months. Not being someone that is very good at asking for help, I am going to adhere to the same advice I did when the twins were first born - and that is to not turn down any offer of help. It will be a rule. If you offer to help - I will say yes!
That being said, sometimes people find it easier if they know what they can help with - so here are some things I can think of at the moment:
- meals (the church has a web roster - let me know if you would like the link)
- housework - with hopefully a better technique than Ashlea!
- any of Murray's 'big' jobs like lawn mowing
- possibly help with the school drop offs and pick ups
- keeping me supplied with chocolate and pepsi max
- staying far far away if you're contagious (or giving us the option of staying far far away from you)
One easy way that people can help is by praying for us. Knowing that people are asking God - the One who has the whole situation in His hands - to intervene on our behalf is a huge comfort. I remember when the girls were born being so overwhelmed that I couldn't pray. That sounds bad I know but I just didn't have any words. I was frozen. Paralyzed with fear. I can still picture myself sitting between their cribs in the nursery - just staring at them. Unable to pray. Unable to think. Barely able to breath.
When I did pray I only had 2 things that I said.
One was "Please God" - code for "Please God DO SOMETHING!".
The other was "Please God NO" which was code for "Please God do something, but NOT THAT".
It was a huge comfort to know that while we were in that paralysed state that Ashlea was being prayed for by many people all over the world.
Please pray again if that's your thing. Or bake, or clean or mow or whatever. We won't turn down any offers of help - and you can hold me to that!
Monday, March 19, 2012
(That's a good thing remember.)
There is still one test we are waiting on, but so far so good.
Wow - maybe this is actually going to happen!!
This is what Ashlea has to say about it:
Saturday, March 17, 2012
I have mentioned my awesome neighbour Kate on the blog before.
On Thursday she very bravely shaved her head to raise money for the Leukaemia Foundation. If you want to sponsor her you still can - the link is here. She only needs another $89 to make it to $7000.
Well done Kate!
You have a lovely shaped head. Shame the weather has turned cold...
Thursday, March 15, 2012
Murray has (finally) been officially given approval to donate a kidney to Ashlea and has completed his pre-admission workup with the surgical team.
Ashlea will have her pre-admission appointments the week of the surgery.
The only thing we are waiting on now are the results from the final cross-match. Ashlea and Murray had their blood drawn on Monday but it can take up to two weeks to get the results back so we may not know for sure if everything is going ahead until the week of the surgery. I don't think I will actually believe it is all going ahead until they are both in surgery on the day!!
Ashlea has her last day at school tomorrow and Murray his last day in the office. From tomorrow evening they will be in hibernation hoping to stay well until the transplant. Obviously I can't keep Emma and Audrey out of school 'just in case' they catch something, so we would really appreciate your prayers for good health for the family in the lead up to the big day. Oh and prayers for a negative cross match would also be appreciated of course!!
It seems surreal to think that this time in 2 weeks Murray will be minus a kidney and Ashlea will be almost finished her surgery and ready to head up to ICU.
Tuesday, March 13, 2012
Homework - we do not love thee.
Tuesday is homework day in our house.
I know that most teachers would prefer we did a little bit each day, but I'd much rather get it all over in one hit - that way we can have a couple of days where we can just relax after school.
Unfortunately that system does not work with Ashlea. As you can see from the photo she just does not have the stamina after school to sit down and do half an hour of homework. I can barely get 5 minutes out of her before she collapses with exhaustion.
Does anyone else encourage their children to pick the easiest of the homework tasks?? Last week we could 'research and write facts about elephants' or 'help clear the table after dinner'. Um - not hard to guess which task we're going to choose!
Wish me luck - homework time starts NOW!
Monday, March 12, 2012
I got to enjoy the delights of infants assembly today.
Teacher friends of mine - I take my hat off to you. I know as a Mummy I am meant to be thrilled at the chance to see my little darlings in school assembly - but really - what an excruciating experience. I don't know how you do it week after week - if I had to listen to several hundred children singing 'My Highland Goat' week in and week out I'd go mad.
Today Emma's class was doing an item and Audrey was getting her first award - and not just a little award - a BIG award. She was star student for the month of February (she is very excited about getting her special badge).
While I'm very proud of Audrey I kind of feel a bit sorry for Emma. She has never been star student - and I doubt she ever will be. Audrey is by nature a quiet, compliant child. Emma is bouncy and talkative and opinionated. The difference between them was evident even in assembly today - Audrey walked quietly up to the stage to get her award. Emma did a hop, skip and a jump when it was her turn to get up.
Am I the only one who thinks school awards favour students with a particular personality type?
Sunday, March 11, 2012
Just recently I've started noticing what looks like a turn in Audrey's right eye. Am I imagining it or can you guys see it too??
Do we need to see an eye doctor for this or is the optometrist a good enough place to start?
Please tell me your eye experiences. You'd think I'd know about this by now seeing as Ashlea is visually impaired but this is something we've never dealt with!
Saturday, March 10, 2012
Thursday, March 8, 2012
Today is World Kidney Day. The theme of this year's World Kidney Day is to celebrate kidney transplantation and organ donation. Trust me - if I could have posted a photo of my actual kidneys I would have - but I couldn't get my hands on the images so you have my Kidney Kid instead. Trust me - she's much cuter :)
Obviously I think kidney transplantation is a great thing to celebrate as it means Ashlea has a second chance at life. Don't tell anyone though, but with 3 weeks to go until the transplant I don't feel much like celebrating.
In fact I'm starting to freak out.
This time in 3 weeks Murray will be coming out of surgery and Ashlea will be going in. I can't even imagine what it will be like on that day. We have been preparing for this for the last 5 1/2 years - and now it is almost here!
I don't know how I am going to get through the lead up let alone the actual day. I already have that tight ball of fear pounding in my chest. I already feel like I can't breath. I can't think about anything else. Yet we have to go about 'normal life' for the next 3 weeks while waiting for the big day.
I'm trying hard to stay in the moment and not let my mind wander to all the what ifs, but it's hard to not go there. You all know what the big 'what ifs' in my mind are - they are the same ones they've always been.
What if something bad happens?
What if she dies?
I can't let my mind go there I know - but it just does. I know that most likely she will be OK - but because we have been 'to the brink' in the past I worry that we are going to end up back there again. Will we end up back in ICU clinging to life? Even if things aren't that dramatic I know from previous surgeries that there are bound to be dark days in the initial recovery where I start questioning whether we have done the right thing.
I am so not looking forward to the next few months.
A couple of weeks ago in church we were talking about the following verse:
I can do everything through Him who gives me strength (Phil 4:13)
I can't remember what was said about it, but it has stuck with me. I can do everything - I can get through Ashlea's transplant - through Him who gives me strength. I may not know how or what that will look like and I probably won't feel particularly strong most of the time, but the promise still stands.
I can do everything through Him who gives me strength.
Tuesday, March 6, 2012
Last week when my Mum was visiting she left the kids a bag of mini eggs for Easter.
I ate them all.
When I was at the shops I bought a replacement bag.
I ate them too.
How many times do you think I will do this before Easter??
Sunday, March 4, 2012
Ashlea has started attending Sunday School this year.
When we were first thinking about changing churches I was worried about how a new church would accept Ashlea and accommodate her needs at Sunday School. I needn't have worried. She has always been welcomed at kids church - even when she would rather not be there!
This year an extra helper has been rostered on to her class so that instead of 3 leaders they now have 4 - and they each take turns being Ashlea's helper. Ashlea is really enjoying it and it makes a huge difference to us knowing that while we are in church she is being included in Sunday School with her sisters.
For all their wonderful efforts though I think some things are getting lost in translation. When I asked Ashlea about today's story (the 3 wise men visiting baby Jesus) I was told by her that in fact there were only 2 wise men and that they brought Baby Jesus a blankie as a present - none of that gold and frankincense stuff!
Extra props to the team though for unknowingly completing the kindy crown making homework for next week :)
Saturday, March 3, 2012
Seeing as the weather in Sydney is crap at the moment the kids stayed inside in their jammies all day today playing Wii and drinking hot chocolate.
I on the other hand went shopping.
Because whenever there is a stressful event looming what else is there to do?
I decided to shop for the girls birthday presents - I may not be able to control how that big scary operation goes but I can make sure that the girls will have presents on their birthdays - which happen to fall very close to the surgery.
I shopped with gusto.
It's probably a good thing Murray will be in hospital when the credit card statement arrives.
As usual I am struggling to know what to get for Ashlea. If I ask her what she wants she says:
It starts with J.
Anyone got any good ideas for something a little smaller than a jumping castle??
Friday, March 2, 2012
We are inching closer and closer to Murray giving his little princess a kidney.
Today he met with the psychologist and the surgeon who both gave him the OK to donate. He even signed his consent forms.
We still have the little matter of the final cross match - which is where Ashlea and I got into strife last year, but at least he has made it this far. The cross match is not until the 12th of March so we won't know for absolute sure if everything is going ahead until those results come back, but so far so good.
Just one more step and our baby will be getting a kidney.
For those who pray, please pray that the cross match will be negative (that's a good thing remember) and that both Murray and Ashlea remain well in the lead up to the surgery. I think my head would explode if we got cancelled because one of them had a cold!