2009 March - Aria MacDonald

Well Hamish has just taken Aria to Starship ED. She woke up with a temp this morning and is now telling us it is Ouchie when she wees 🙁

This is bad news, a urine infection will not do her kidneys any favours. At the meeting last week the docs said that we need to avoid urine infections and staph epidermis line infections. Anything that will put extra pressure on her kidneys will bring diaylsis forward. They are just coping with what is required of them, let alone extra pressure!

So hopefully we have caught it early enough and it doesn’t spread to her kidneys. Still I am nervous about what lies in store for our girl over the coming days.

Update Urine sample was clear!! YAY. Mmmm what is going on then??

Another update Aria is coming home, her temp is gone and the urine is clear so there isn’t much else that can be done. Yay. I guess Aria wasn’t actually admitted so this doesn’t count ! We are still hospital free in ’09.

Aria is wiped out on the floor and has been all day. She had a really bad night vomiting and this morning I thought she was just recovering from lack of sleep. But now at 4pm after lying on the floor all day I am starting to worry. Her temps aways hit at around 6pm so 2 hours to go!

In contrast Asher is full of beans and I am trying to make sure he doesn’t bother her with all his energy. The plunket nurse came over today, she is also the pastors wife of one our churches so we had a nice chat. Asher is completely fine and meeting all his milestones and is tallish and slim.

Today is one of those days were I notice the huge difference between Aria and Asher and it makes me sad for Aria. Her life and energy isn’t what it should be . We haven’t been in hospital since last year! That is nice to type but maybe our nice run is coming to an end.

Better go Asher is eating paper 🙄

Aria was a complete star on the wedding day! YAY !! And so was Asher! Aria put on her dress and even put on her fairy crown and held her flowers like a great little flower girl. Both of them had a bit of a cry when they saw all the people but that was ok cause it was a little over whelming.

We had an excellent day and were so amazingly honoured to be a part of it. Below is some photos of the day. A big CONGRATS to Matt and Rebecca!! And thanks to Rolf and Helen for putting on a wonderful day. And another thanks to Bob and Christine for all their help. Hamish and I were reflecting on the fact that it took four people to wrangle the kids for the day! Well my input was too a lesser degree given my bridesmaid duties but Hamish and Nana and Poppa put in a marathon effort.

Speaking of Marathon, Uncle Bruce completed his half one in excellent time in 3 hours and 21 mins! I bet he is pretty tired today but he did really well. Thank you Uncle Bruce for your effort, we are so proud of you!

As for the kidney meeting on thursday, it was a great appointment. The long and the short of it is that Aria’s kidneys are declining and we need to get to transplant and have months in NZ rather than years. I guess that is not new info but we were given to opportunity to ask questions about dialysis to which we used Aria’s line of No Way! Well not really but we don’t want to know until if and when we are have to go there with Aria. We already know it is going to be hard for her and Us. We are hoping to not to have to start in NZ though.

The Breens and the MacDonalds

Aria and Asher being cute

Mummy and Asher

Tomorrow we have a meeting with Aria’s kidney Doc.  Aria is under a bunch of teams at Starship, we joke that we she will have a consultant in every different team by the time we are done.  Not that that is particularly funny but we seem to have quite a collection.

We are sitting down to a meeting to talk about the latest news with Aria’s kidneys.  I guess we are thinking the news won’t be good and I don’t really want to have a discussion about dialysis.  Yes head in the sand kinda stuff! 

Still we have a busy day tomorrow, lots of appointments.  Rebecca is getting married on Saturday and I am a bridesmaid and Aria is a flower girl.  Although currently she is refusing to put on her dress and cries when we talk about it.  So we don’t talk about it but I do wonder how we are going to get on!  Asher has a cute little suit complete with a bow tie!  He won’t be a problem cause he just goes with the flow.

So our next update will include news about Aria’s kidneys, an story about flower girl tears and tantrums AND how Aria’s uncle Bruce did in his half marathon which is on Saturday too.  There is still time to sponsor him, he is getting very close to his target!!!

Guess who we met today?  Scott Large!  Who is that you might be asking.  He is the first and currently the only NZer to have received a bowel transplant.  The KIDS foundation was nice enough to fly him up and put on lunch for us so we could meet him.

Scott was really open and answered all our questions.  He even showed us his scars- how cool is that.  Did you know he went to Canada on 4 days notice, waited 6 months for organs, had the transplant and was back less than a year after he left!  Can you believe that!?  That could be us, only away for a year.  Of course it might not be but still it is nice to have that hope.  He is living life to the full and has such an awesome attitude and is completely well.

We were so honoured to meet him and shared a bit about Aria and our journey.  It was amazing to think we were told in the beginning there was no hope for Aria when Scott had be living in NZ post transplant for 3 years in perfect health! 

Matisse will be the first NZ child to receive a bowel transplant and Aria will be the first to receive a bowel AND kidney.  Wow, a bunch of firsts. 

But now Jodee has some competition for ‘hero’ status in our books 😉

Scott is completely awesome and such an inspiration

Dont forget Aria’s Uncle Bruce is doing a half marathon and raising $ for Aria.  Go Uncle Bruce!!!  Stop by and support him HERE.

Today I decided to be brave and take the kids to feed the ducks at the Botanical Gardens.  But when we got there the ponds had been emptied and there was no ducks.  Aria was not impressed as I had promised ducks!  We kept walking and found some hanging out on the grass area.  So we fed them which was a little scary because they came really close but the kids seemed ok with it.

As we were driving out of the park we spotted Lara and Sam and Sam’s mum on their way to feed the ducks.  I turned around and we caught up in the car park and invited them over for lunch.  They came over and we had a great time eating and chatting.

And today we got Aria’s LFT (liver function test) results today.  They are improved! Her bili is 44 which is the lowest it has been for awhile.  I was hoping for 24 but I can live with 44.  It ideally should be just 4, hopefully it will keep improving.

Dont forget Aria’s Uncle Bruce is doing a half marathon and raising $ for Aria.  Go Uncle Bruce!!!  Stop by and support him HERE.

Since November I think Aria has been waking up at around 5am each morning and coughing and vomiting.  We have worked thru this and tried a bunch of different things but alas it continues.  At the beginning she used to yell and wake us up.  Now she just coughs and we sit her up and she vomits.  It is awful and tiring.  Mostly she will lie back down and stay in her cot until around 6am.

But it mainly means she is awake really early.  This morning it was 4am and it was my turn to get up to her because Hamish was pretty tired as I was away on the weekend.  I couldn’t be bothered going back to bed at 4am so have been up since then.

We went a couple of days last week where there was no pukes and coughing and Aria slept in until 7am!  She would wake up and say YAY No Pukes!  I feel really bad for her cause it must be an awful way to wake up.  And it means one of us has to get up at 5am everyday.  Thankfully Hamish comes from good breeding stock and his family seems to survive on little sleep.  His mum gets up at 5am everyday!  So he does the majority of the getting up because I turn into a fairly yucky person when I am tired.

In good news, Aria’s eyes are looking pretty white the past couple of weeks. Tomorrow is monthly bloods so it would be interesting to know the results of her liver function tests.  I am hopeful they will be good.