2009 September - Aria MacDonald

Today was Hamish’s last day at Fisher and Paykel Finance

Over 3 years ago our plan was to have our baby and go to the US for Hamish to study and complete his Masters of Divinty.  Obviously things didn’t not go to our plan and now we are going to the States for a completely different reason.

Our plans weren’t God’s plans.  But His plans and His provision was F & P Finance.  After Aria was born and we were home it was time for Hamish to get a full time job.  He was going to accept the first offer he got and that came from F & P Finance.  Turns out God blessed us with an amazingly supportive and understanding workplace.   Not only did they fundraise $1000s for Aria but were very very understanding with days off and last minute phones call from  Hamish to say he was needed at hospital with Aria.  We were so very grateful and will always be for the kindness shown to us.

To be honest we thought we would be jumping for joy at the idea of Hamish being off work now but there is sadness at leaving these people who have cared and supported us.  Even the CEO and Chief Ops Officer came to farewell Hamish and say hi to the kids at his farewell morning tea. Very cool.

But of course this is not goodbye because we will be back to visit.  The kids loved visiting today.  Asher ran around laughing and Aria collected handfuls of chocolates and looked for bunny rabbits.  Cute.

Thanks F & P Finance!

There is nothing to report but an update on our life over the past week.

Aria is really well at the moment and we finished the last ABX dose yesterday morning. YAY!  Two extra hours on the pump every day was a pain for her and us.  But we are really pleased that she is so well.  Lots of walking and talking and happiness.  YAY!  She is very yellow though, but we try not to notice.

We have been away this weeks at the Jansens house in Grey Lynn which they were very kind to let us stay at while our house is being prepared for painting by our friend Martin who has done a completely amazing job.  We are painting Aria’s room, she picked THIS colour, which is actually pretty cool and is called Manukau.  We would love to paint her room that colour but best we stick to the neutral colour since we are hoping to rent our house out soon.

Also we are off to the Dorothy the Dinosaur Show tomorrow!  The kids are huge Wiggles fans and are really excited.  Aria is watching Popping Popcorn at the moment thanks to a parcel of goodies my dad sent over. Aria loves popcorn but can’t eat it, at the moment anyway 🙂

I learnt something very important today.  Never ever leave your cellphone where you can’t hear it.

Why?

Let me explain

Hamish and Aria went to pick up the balance of her antirobotics (yes robotics) while Asher and I went to have afternoon tea at my friend Christy’s parents house to celebrate her being over from OZ with her little girl.  It was nice to chat up and spend time with people.  Asher was running around like a mad person so it was busy making sure he wasn’t getting up to mischief or breaking anything.

Anyway Hamish and Aria drove all the way in to Auckland Hospital to collect the rest of the ABX that they had said would be there last Wednesday.  Hamish got there and they said to come back in ten mins.  He returned and they said they didn’t have them.  What!?  We had used our last dose that morning.  They said the computer was showing two boxes but then also said the wholesaler had rung late Friday to say they were out of stock but they would call us tomorrow and courier some.  Two different stories- very strange.  So Hamish left and came home.

We meet at the Peeks and were panciking as to how we were going to get Aria her dose- there is no way she should miss 2 doses.  So we went home with the idea to ring the ward and see if there was some there.  I got home and checked my phone- 3 missed calls!!!!  And a message saying ‘please come back we found your ABX’ :<

No way- we were steamed AND it was 4.22pm and the pharmacy had closed at 4pm.  Epic fail Pharmacy as my sister would say.

Thankfully our ward are awesome.  We rang 26B and the nurse rang the on call Pharamist who said he couldn’t help cause Aria wasn’t an inpatient.  So then the nurse rang the Gastro Consultant cause Aria just needed those ABX.  The Consultant then rang me in total of three times.  First to say ‘Whats the story’ second to say ‘I am on the case’ and thirdly to say ‘Come back we have found some’

What a legend he was!!! As was the nurse who helped us!!!

Needless to say the Pharmacy dropped the ball majorly but our ward and team totally picked it up and ran with it and got it over the try line for the best result for Aria.   Needless to say two trips into town and back was a waste of time and petrol and we will be complaining about the very poor service.

I wish I had my phone my pocket and not my handbag.  I realised that when we are listed for transplant and waiting for ‘the call’ I won’t have the luxury of just enjoying a party and not worrying about my phone.   Lesson learnt !!!

Wow what a huge day we’ve had.

We were pretty nervous this morning about the huge day we had ahead of us. We had a film crew following us all day, and in the middle of that a WINZ appointment to see if we could cope with me finishing work sometime soon.

Now at the end of the day, not only have we survived but we have seen God go before us to make the day a great success.  Filming with the crew from Attitude TV went great. They were very nice and professional, they also had a great empathy for our story. Aria did really well, she wasn’t too intimidated by the crew and she did some lovely little things that showed off her personality really well.

The highlight of the filming for Anita and I was when Asher came home from being with JoJo at the Little Playhouse. The two of them were sitting on the couch and Aria was just pouring out her love on Asher. She was showing him the pictures we had drawn, having try on the bracelet she had made at preschool and asking for cuddles and kisses. It had me and Anita who were standing off to one side melting inside about how sweet they were and how much they love each other.

The other great experience that we had today was our WINZ visit. We had been praying hard that the person that we would speak with would be understanding to where we are at. When we went in there we met a lovely lady who sought to understand our situation and was willing to listen and help as much as she could. We were so grateful that it went as well as it did.

All in all a great (and exhausting) day, one which leads to say God is good.

As we were going up the motorway on ramp heading home and Aria said ‘Bye Star Love you, See you next Friday”

It was really funny but I was like ‘next Friday !?’, I hope she doesn’t know something we don’t know.

I feel like we might be home for a decent period of time.  Aria is on ABX twice daily and they are an hour long and infused thru her line.  It is going to be tricky to manage because it means a total of 15 hours a day on her pump.  But it is better than being in hospital!!

Please pray for our meeting at WINZ tomorrow at 12pm, we would covet your prayers.  We are feeling more and more that Hamish needs to leave work to keep our little family going thru increasingly tough times.  But obviously we still have a mortgage and need to put food on the table so need WINZ support.  But we need someone compassionate and understanding- hence the need for prayer!

Thanks always for your support!!

Just as I got home from picking Asher up and taking him shopping, I got a call from Anita. She was excited to tell me that Aria was up and about and had walked all the way from our room to the phone. While this would only have been about 15 metres, it is about the furtherest she has walked in a long time, especially outside of the comfort of our home. We are pretty excited by this, she sounded very happy and proud of herself when she talked to me on the phone.

This extra energy may be because of the transfusion she had today. Aria was very good during her red wiggle juice as we were calling it. Poppa did most of the looking after her, playing with some little presents that Poppa had brought in with him. Thanks Poppa.

Aria might be home tomorrow night, but her temperatures aren’t totally under control so we’ll see how things go. Just in case, Anita should be getting trained on how to prepare Aria’s IV antibiotics as I write this.

Please continue to pray for Aria, that the temperatures go away for good, and that her blood count stays up.

Looks like Aria is in for another transfusion today.  Sad news that her HB has dropped again as reported yesterday.  Hopefully we can still blame the Swine but not sure about that any more.

Currently the plan is to be discharged tomorrow maybe on ABX depending on how the next 24 hours goes.  That would be good because the Davy’s are coming for tea on Tuesday night and we have filming all day and preschool on Wednesday.

This morning I have been wading thru WINZ paper work and making sure I have every single figure backed up with a document.   Still haven’t got it completely sorted but we have an appointment on Wednesday for that too.  Really praying they might be gracious and help us out so Hamish can leave work soonish. It is just getting all to hard to juggle everything currently and we are all paying the price.

Thankfully it seems like this concern hasn’t come about.  Aria’s temp has been perfect all day and we home on day leave after getting the green light from the Doc this morning. 

We are disappointed about Aria’s HB dropping again.  The plan is to retest tomorrow and if it is in the low 70s then she will need another transfusion.  With the new Labtest take over we are yet to hear a single positive word about them but have heard lots of horror stories about labs not being processed or processed wrongly.  The Doc said maybe they could of fafted it up.

My friend Jo and the ladies at my church and wider churchs are organising meals for the next little while.  What a massive blessing.  Our fridge is a very grim site currently.  Aria has been in hospital every month now since June and previously to that we had May off.  Chances are you go vegie shopping and it all ends up becoming something strange in the fridge weeks later.  So thanks to everyone who is helping.

Christine, Hamish’s mum is coming over to play with the kids while Hamish and I get out for sometime together.  It is hard to keep a life going and communciation flowly smoothly when you haven’t lived under the same roof for nearly two weeks!  So we are grateful for that, and the fact she blitzed our house yesterday and cleaned and tidied from top to bottom.  Again, another thing that often goes to the bottom of the list.  Who wants to vacuum and mop floors when you have spent all day in hospital !?

Thanks for your support and comments.

Last night Aria’s Nunu (the tube that empties her stomach of bile etc) leaked onto her wiggle (the line that goes into her blood stream with her nutrition). This has the potential to be quite bad as the tummy is full of nasty bacteria etc that really shouldn’t be in your bloodstream.

So far there has been no signs of any infection speading to her blood, but if you could pray that there would have been no contamination of her blood, that would be much appreciated.

Aria’s blood count appears to have started to drop again… not so long ago we were celebrating triple digits, now it is down to 73. This would explain why Aria is a bit tired at the moment. This is possibly a side effect of the infection that is dogging her, and with her not being able to make more blood cells easily, it is always a cause for concern.

Aria’s temperature has been a little spiky today, she’s had 2 doses of the new antibiotic so hopefully it will start to work its magic soon.

We had to stay in at hospital today, unable to pop home on day leave. This is a bit disappointing because it is easier to entertain Aria at home than at hospital. Asher and Anita came in and we had some family time. Asher loves the lifts, and going into other peoples rooms to have a nosey…. crazy little feller.

Anita and Aria are having sleep overs tonight, one prayer we always appreciate is for a good nights sleep for whoever is staying with Aria, sometimes the nights can be very interrupted.

We’ll keep everyone posted, and hopefully we’ll have some good news come tomorrow.