2007 September - Aria MacDonald

They say you don’t appreciate what you’ve got to its gone, and it is true when it comes to Aria’s central line too.

When she has a central line it is so easy to access Aria’s blood stream for all the test that she needs to go through while she is in hospital. Without it poor little Aria has to go through the trials of having numerous finger pricks and the occasional leur inserted into one of her veins to get her precious blood.

We have to get blood samples out of her veins at the moment to see if the bugs have made like Elvis and left the building, however that proved easier said than done today. Aria was a bit puffy as a result of the fluids she is on and the infection she had affecting her fluid balance meaning that it was a real mission to find a vein. It took four goes and two different doctors to finally get the 1ml of blood required to see if Aria is ready for her next line. Hopefully in 48hrs we will have the go ahead to get the next ‘permanent’ line in.

In other interesting Aria news, today Aria found a new favourite toy, one of the hospitals thermometers. It was acquired about 2 o’clock this afternoon and not relinquished till it was dropped out of sleeping hands tonight, a little odd but whatever makes her happy in these hard days.

Thanks for all your prayers and kind thoughts, if we can make a prayer request pray that she will be able to get a new line very soon and also give thanks to God that he preserved the previous one so well, it truly was a great act of graciousness on God’s behalf.

There has been a big event since the last post.

Aria’s line is gone 🙁

Turns out the reaction to the imms was really a line infection. Seems like the bugs from the last one a couple of weeks ago were hiding and the only way to kill them completely was to remove the line. Human bodies aren’t supposed to have bits of plastic in them, well not in the veins directly because bugs stick and Staph is a sticky bug.

Our poor Dr E got a bit of grilling from Hamish and I before we would sign the consent form. We just needed to make sure we were making the very best decision for Aria. Times like these you appreciate the faith and trust that you put in the people that advise you. Aria’s lines are so very very precious and no one takes to removing them lightly.

Still it is important to remember it is Aria’s first line and she has done well to keep it so long. It is amazing and she is well loved and looked after by God.

For the next couple of day she has a temporary line in her foot until a new central line can go back in. If you put a new one in straight away the bugs find it and stick to the new one! I tell you, bugs are tricky things.

It has been a hard day for Hamish and I and most importantly Miss Aria. Gosh she does it tough. She was screaming when we went down to Recovery to get her, most unlike her. A nap with Daddy did the trick and she was ok after that. Recovery is like Parent Hell. I truly hate going there, finding your precious baby girl in a rather terrible state. It is awful. Still Aria is ok but knowing we have to do it all again in a couple of days time is not nice.

Thanks for your support.

Four was the number of shots Aria had for her routine 15 months immunisations. It was not fun for her or us. She was very brave and fought pretty hard as our girl does. Unfortunately she has had a fairly rough reaction to them, very high temps last night and tonight. Poor thing, she does have it really hard sometimes. It is heartbreaking.

Today we also had our long awaited kidney tests. Part of spelling mistake in Aria’s DNA means that her bowel doesn’t function and her kidneys are small. Today’s tests will tell us how bad or good her kidneys are and this will determine when we go to transplant. So stay tuned -the big answer will be here in a few weeks.

We are nervous of course. We love NZ and transplant is a HUGE deal. But it is the only option for Aria and the only chance for her to eat and live. So we must go, but when? Well we will know soon and the pressure will be on to raise the $ we need to do this!

Last night Hamish and I were privileged to attend the AIC Fashion Show that was put on by the Interact Club. The profits from the night went to Aria and what a night it was!! We had such a great time! It was a full on show with models, music and the latest fashions from stores such as Principles, Cue, Stax, Dotti, Portmans, JayJays and many more!

It was truly humbling and amazing to sit there and watch the hard work and talent of others unfold before you knowing that they were doing this to help Aria! Our precious daughter! We are on this journey hoping and praying that New Zealanders will support us in this huge task of raising this money to give Aria life. And they are in amazing ways.

Thanks to everyone that was involved and put in all the hard work to make it happen- hours of work! Yay for Caroline- the head organiser, who along with Willem were the MCs for the evening. Great job guys. Thanks to everyone that came and brought tickets!

We are truly grateful!

Sometimes Hamish and I say this to each other in our moments of self pity. Occasionally we have a Pity Party for Two as we reflect on our troublesome life lately. First Aria getting pretty sick and nearly losing her line, the news of her fractured leg and possible bone trouble, other dramas which will remain under that category and now finally our car being stolen.

Yesterday came the news that the insurance company had written off the car 🙁 . This was not what we were wanting to hear. We are so bummed to have to go thru the stress of buying a new car and are not going to receive much back from the insurance company for it. I guess it is hurtful to think that someone has done this to us and cause us this pain for an evening out in our car having fun.

Still it is easy to focus on the hard things in life and forget the good things. Aria didn’t lose her line, her leg was already healing, we have great people to support us, our car was actually found, a car to drive in the mean time (and lots of kind offers of another cars to drive), and tonight we are off to a fundraiser put on by strangers to us who just want to help our little girl get her chance to eat and live! Plus we know all our troubles are not in vain but the working out of something greater by Someone Greater.

So we are in the market for a car, a cheap reliable economical car!! If you are selling one or know someone that is drop us a line on the contact form 🙂

Our car has been found!!  We got a call today saying it was found yesterday, not sure where or by who yet.  It sounds like minimal damage depending on how rough they treated the engine.  Anyway it is good news we are relieved and thankful for insurance although the $500 excess is huge bummer in light of our need to save save save!!  Never mind, what can you do?

We would love your support on the following two fundraising events for Aria.

This Friday night (21st) the Interact Club of Auckland International College which is part of Rotary Remuera is holding a fundraising Fashion Show for Aria.

Time: 7.30pm

Venue: St Peters College Hall

Tickets: $10 for students and $15 for Adults. Please contact the organiser Caroline at mellifluousli_psychedelick@hotmail.com for tickets

It will be a great night, they have puts in heaps of work and there will be spot prizes and a $3 raffle.

Also, The Papakura Lioness Club are running a Trivial Pursuit Evening on the 16th of October.

Time: 7.30pm

Venue: Papakura RSA, Elliot Street, Papakura

Tickets: $15 per head, tables of 8. Please contact Shirley 266 6344 or Tracy 299 8378 to secure a seat/table.

So get a group together and enjoy a night of fun and fabulous prizes.

Firstly Telecom has kindly decided to donation $1 million dollars to charity in light of their recent dramas with their customers emails. Xtra customers can nominate charities to receive the money and if you would like to nominate Aria we would be grateful!!

Here is the word from Telecom:

You can vote for your preferred New Zealand charity, and we will donate
$250,000 to each of the four charities with the most votes. To place your
vote from Monday 3rd September, go to www.charityvote.co.nz.

Spread the word – you never know what might happen. Thanks to one of our kind supporters Michelle for bringing this to our attention!

Also there appears to be a rumour doing the rounds that Aria has received funding for her transplant! I have no idea how that came about but it isn’t true!! In fact that application hasn’t even been put in yet. There will be a big song and dance when we get the funding but in the mean time we are fundraising hard.

Our family gathered on Friday night for the Warriors game. Aria has two cousins, Tivoli and Venisio. Tiv is 4 and V is 10 months. Tiv sometimes asks questions about Aria like ‘does she do poos yet?’ or ‘where are her tubes?’ I explained her tubes as simply as I could (pretty tough concepts for most adults yet alone a 4 year old) and that Aria will do poos when she gets her operation.

Tiv wrote Aria a lovely letter (with his mums help) and did this awesome picture for her which he gave to her on Friday. It was so very sweet and heartwarming. He asked on Friday night ‘how do I make her laugh?’ so we gave him a few pointers and Aria was laughing away pretty soon.

I still can’t get my head around the fact there is a fracture in Aria’s leg. She seems so fine. She has a rocking horse which doesn’t have wheels yet this doesn’t seem to be an issue as she makes it take her places!!

We are giving her her antibiotics every six hours which is pretty tiring particularly at 3 am in the morning!! But it is fine and we are coping. I dropped off her blood culture to Medlab this arvo and the lady at the desk looked at me in disbelief that I did it myself. Tiv asked once if Uncle Hamish was a doctor one time when Hamish was doing TPN! Funny how life changes when you have kids!!!

In the previous post we updated that the bone scan had picked up ‘something’ in Aria’s left leg. We went expecting to receive news that the Staph bugs had spread to her leg bone. This would have been bad news meaning at least 6-8 weeks of antibiotics.

Instead came different news, we are told it is better news but we are still trying to absorb it. Aria has a ‘healing fracture’ in her leg. It is a couple of weeks old. We were really upset and distressed at this news. Mainly because she is pretty immobile and doesn’t do much to cause such injuries.

There was a minor incident a couple of weeks ago, which was the evening before our clinic appointment. Thankfully we brought this up at clinic and where assured it was nothing serious and Aria was checked and she was fine. However it may be that because Aria doesn’t receive normal food and her bones aren’t being used that they may be brittle and likely to break easily. We have more tests to do to confirm this.

So yesterday was a dark day for us, perhaps the darkest since her diagnosis day for a variety of reasons which we won’t go into. Needless to say we are moving on. Thank goodness for the strength that comes from Above and the support of Aria’s main medical team and Sam and Heather (other mums on the ward-thankfully) who supported us thru rough waters.

We are finally discharged and at home, feeling a bit numb and very tired but glad to be here.

Well Aria’s remarkable recovery has had a hopefully small unexpected hiccup. The docs where concerned that the Staph bugs might have seeding and spread to other parts of her body like her bones and heart. They ordered a bone scan and of course didn’t think they would find anything because Aria is so well.

We were wrong. They found something in her left leg bone (can’t remember which bone). So we get one night at home and back in tomorrow for more tests and probably staying more nights. 🙁

Her recovery is still no less remarkable and she is so well which makes the bone’s infection so strange!! Hopefully it will just mean extra weeks of antibiotics (means getting up at 3 am every night!!) and nothing more.

Thanks for your support, prayer and kind words, we are really grateful.