2007 October - Aria MacDonald

Wow it feels like life with Aria has changed hugely in the past week or so!

Why?

She is finally mobile!!!!!

She has bum shuffling down to a fine art and can get places pretty quick. Crawling for Aria just isn’t a happening thing. She has always hated being on her tummy and who wouldn’t with 3 surgeries and a tube poking out your tum.

Anyway so my days of know-she-is-in-the-same-place-I-left-her are over. But on the plus side so are the days of pointing to a toy and grizzling until she got it. Now she can get it herself!!

Also her bed times have changed. She is up an extra hour now. We connect her to TPN at 6pm and she goes to bed at 7pm. So it makes for an interesting hour as we follow her along with her pole trying not to get tangled and her line caught (a little scary to be honest). Yes we have a name for the pole too – Aunty Pole. I will explain why in my next post! Actually the pole is pretty cool, I will post a pic too.

We are getting a bit slack at these posts! Our weeks are so busy. Yesterday we went to the Parent and Child Show with Sam (mum of Lara who had the liver transplant). It was awesome, met so many people who came up to me and said ‘it this Aria?’. Yay so many people are supporting our wee girl! It is so heartwarming!

Well we have managed to stay out of hospital for a whole week!! You know things have been rough when you start to count the number of weeks rather than months in which you are home.

One of the things to come out of the hospital stay(s) was a story from one of our nurses on 26B. She was telling us there is a little 3–year–old girl who spends time on the ward and she calls her central line ‘her wiggle’. Hamish and I thought that was very sweet and decided to borrow the name for Aria’s central line since it will be awhile before she can name it herself!

Anyway giving it a fun name has made a big difference in our cares with Aria. Aria thinks her wiggle is very funny and laughs like mad when we tell her ‘mummy and daddy need your wiggle’ She points to her tummy (the end hangs by her tummy but comes from her shoulder) and she holds the end between her thumb and finger. It has made it easier to give her instructions. ‘No touching the wiggle when Mummy is using it’ She nods and smiles and leaves it be.

Not that she touches it much anyway, she has alway been really good with her tummy tube and her ‘wiggle’. There is always a risk of grabbing and giving it a pull, but she has been fine so far. In the bath we have never had a problem, she is much more interested in her bath toys and splashing mummy (I get wet but she thinks it is a riot!!). And the rest of the time it is tucked under her clothes.

Anyway — thanks for checking in on us!

Hello everyone,

We just got back from an amazing fundraising event for Aria.

The Lioness Club of Papakura put on a trivia night for Aria that raised an estimated $5000.00!!! Attended by over 200 people and supported by many local businesses, great fun was had by all.

Special thanks go to Shirley and Tracy of the Lionesses who drove the organisation of the event, you guys did an amazing job!! You can be very proud of the achievements of the Lioness team.

Thanks to all the businesses who contributed and to all the people who came along, it would not of been such an awesome night without all your contributions.

For those keeping score at home, our table came 6th, which was due to the outstanding generosity of the sponsors was still good for a prize, yay for us!! I think everyone who was there pretty much got a prize. There were over 150 bottles of wine donated and also a signed Warriors jersey that went for $400 at auction!!!

Thanks again to everyone that supported the night including our lovely babysitter Katherine who looked after Aria until we got home at 11pm (and she has classes tomorrow- thanks Katherine!)

We are so encouraged by peoples support and generosity to our girl! God has truly blessed us.

…what exactly to write in these posts? Is the purpose of this website to inform you all of Aria’s health and progress and timeline to transplant? Is it also a tool to help us with fundraising? Is its purpose to bring you all a glimpse into the life of a family with a chronically ill child and the trials (not that I feel Aria falls under that category but I think that is the term).

Before Aria came along I thought Starship was for kids with broken bones and who had cancer. I knew nothing about it except that it existed and didn’t give the place much thought. Now my eyes have been opened and part of the reason for this blog to also share this the journey and perhaps give you an insight.

Last night Aria’s temp spiked. The dread in my heart was massive. I could not go back and could not face another week of my girl being sick and the ‘what ifs’. Thankfully there are two of us. When one is weak another is strong. Hamish took Aria in and I stayed home. They ended up in overnight but are just now leaving to come home. Aria is ok but the temps remain a mystery.

Where to from here? Will there be another hospital stay? Yes of course! We are hoping and praying for a break from this cycle of home and hospital (particularly with the new baby just weeks away). ‘I can do all things thru Christ who strengthens me’ This is the heart of the solution to our angst — translating verses from your head into your heart.

We are home, again!  Will we stay here?  We hope so!

It is great to be home, Aria’s temp was perfect last night as per Dr E’s instructions.  Aria got shown the temperature chart, which was due to start a new page that night and firm instructions (which included the use of Aria’s full name!) to behave :)  Funnily enough Aria does seem to listen to Dr E, I think it is the cool british accent.

Aria is on some oral medication which is new for us- cherry flavoured!! She really likes it.  Her tummy has some fungal yeast infection which is common after lots of antibiotics.  Anyway it will go into her mouth and out her tummy thru her gastrostomy.  It doesn’t go into her blood stream.  Aria has started to ‘drink’ water.  She doesn’t absorb it, it is a bit like pouring water on your head, it won’t quench your thirst, but it is nice for her to get some oral drinking skills.

Today our Dr told us that Aria is far too happy to be in hospital.

The deal they gave us is that if Aria’s temperature is normal all night she can go home tomorrow. So lets pray that she stays under the magic number 37.5 and we get to bring her home.

Aria’s temperature still murmurs away, normal one minute and not the next. They aren’t severe but they are very troublesome because we don’t have a good answer for what is causing it. I would think that they will want to send us home to we do know whats going on or they go away for good. Please pray that one or both of these conditions are met.

 On the brightside Aria got a very pretty pink dress today, she looks like a little lady. She hasn’t worn dresses too much because of the need to keep her lines safe, but she is so well behaved with them, we don’t think it will be an issue. Yay for pretty dresses.

Aria’s temp remained normal all night until this morning where it is now around 37-38.  This is very strange to us.  Normally her temp gets high during the night and then drops in the morning.  When she is sick it rages away once getting as high as 41!!

I am sure the Docs have their theories, one being a normal cold virus.  We are waiting for Dr C to come and see us this arvo to see what the plan is because 37-38 isn’t a serious temp so it will be interesting to hear his thoughts.  Hamish did the night shift last night and was most disappointed Aria wouldn’t sit nicely and watch 80 mins of rugby this morning.

Unless you have checked Aria’s site in the past 12 hours you might of missed this post.  The post was rejoicing over the fact Aria was home.

It was not to be.

Aria’s temp spiked during the night and this morning and we have had to take her back.  Because she was only discharged overnight her room was still clear so we went straight back to the ward instead of ED which was great.

We are so very disappointed and concerned as to what is causing this new temp.  Surely it can’t be a line infection because she has a brand new line in!!!  Anyway please keep us in your prayers, we are so sad about Aria being sick again.  She has had a very difficult week just gone.

Hamish is off today which is great, he works most Saturdays and was supposed to work today.  His work was looking for people to take leave today and he said ‘yes please’ thinking it would be great family time at home to recover from the past week.  Our Dr E is on next week which is another bright spot in the whole affair although fair to say she must be tiring of us!

We are desperately holding to to our faith and trust in God that He knows and has planned all things.  But the constant and seemingly unrelentless drama of our lives is making it hard. 

I should end on a good note.  Please keep praying and your words of support make a big difference.  Thank you for checking in.

We are home! 

We spent most of the day getting Aria’s iron levels topped up.  Iron infusion appears to be a dirty world in Aria’s world.  Dr E always books us in to have an infusion done and what do you know Miss Aria gets sick and we have to cancel it.  Bugs love iron so it isn’t a good idea to give them more stuff to feast on.  Last night Aria had a wee temperature flicker and then again this morning.  Gave us a bit of a scare and it looked like today’s plan to infuse iron was in doubt.  But nothing came of it and it settled so we went ahead YAY!

Thanks to Hamish’s very supportive workplace he had been around a lot this week which has been fantastic!  Aria has been really pretty grumpy and bothered due to lack of TPN and only fluid.  Today she was totally back to normal which is a huge relief, although she must of been fairly down cause she invented a new scream/cry that we haven’t heard since the new line was put in.

We are back doing 6 hourly antibiotics at home meaning 3am wake up calls but it is only for 4 days so that is ok!  It is great to be home so we can manage.

Thanks for your support!