2010 August - Aria MacDonald

Last week was a very busy week.  Attitude TV was here finishing up the Aria Trilogy or Aria Movies as they are called in our house.  After 4 days of filming I guess you can say it is a wrap!  We are honored to have Attitude tell our story and they have been true and kind to us.

We have some other media stuff coming out soon, magazine and TV both in NZ and the US!  Lots of people interested in Aria’s amazing story.  Will let you know all about it soon.

There has been several moving experiences with staff members from UNMC recently.  I forget that it wasn’t just us watching and seeing Aria’s dreadful state day after day.   People who worked with Aria are so happy and excited she is doing so great there are even tears that flow.  We are again honoured she has touched others so much.

Aria’s eating and moving are coming along great.  Rice is the new fun food.  She kinda puts it in her mouth and takes a drink of water and swallows it like a pill.  Pretty funny but at least it goes down!  Today she went from sitting to crawling all by herself.  And stood and turned herself around to sit down on the washing basket with assistance from Hamish.

The other big news is Aria’s Make a Wish has been granted and we are off to Disneyworld in Florida from the 8th to the 14th of November.  Very exciting.  It is like 6 different theme parks and we can go to Seaworld too.  Can’t believe it- what an amazing experience for this little kiwi family.

September is going to be a great month.  Two different sets of visitors 😉 are coming to see us.  Hamish is heading to Texas for the big Cowboys/Texans game!  The Nov is Make a Wish trip/Thanksgiving/10th Wedding Anni.  And Dec is Christmas.  Appear Oct is going to be a boring month- good we might need it!  The MacDonald are living life- Praise God!

Just a very quick update to say we are having a WONDERFUL time.

Things have been really amazing the last almost six weeks since Aria got out of hospital. To think we haven’t had any dramas or major issues with her health and care and that Aria is making such good strides is really a testimony to all those who have taken care of her and to the graciousness of God in giving us a time of recovery and unity to recharge us a bit.

I was going to say rest and recovery but couldn’t really convince myself on the rest part. As parents of two littlies it can be tough at the best of times but when one is highly dependent on you to do anything and isn’t sleeping through the night, rest doesn’t really fit.

However in the last few days we have seen signs that rest could be in the future. Over the last couple of days Aria has started to do the most exciting thing that a parent can experience, amuse herself for periods of time. Now it may be an exaggeration to say it is THE most exciting thing a parent can experience but after weeks and weeks of “Mummy, Daddy, Mummy, Daddy, Mummy, Daddy, Mummy, Daddy, Mummy, Daddy……….” a few moments of peace when she is doing her own thing is absolute BLISS.

Another exciting development is that at PT over the last couple of days Aria has started to do a little bit of crawling. Now for most 4 year olds that is not a big deal but for Aria that is huge, she is officially mobile. Ok, so we are only talking a metre or two at a time but you don’t eat the whole elephant at one sitting you work at it bit by bit till its all gone. Now I have used that rather obtuse illustration I’ll try something else, the longest journey starts with a single step. Aria is moving, she’ll get a taste for it and eventually there will be no holding her back. Seriously, we are so proud of her progress physically, the PT and OT teams are doing an AMAZING job and couldn’t be more pleased with her progress. Aria is very funny at PT she moans, complains and sometimes cries at the start but by the end she has a huge smile and feels very proud of herself, as do we.

Anywho, just wanted to post to say how wonderful it is to have an ever improving Aria in our life and how thankful to God we are. Now if we can only get Aria to sleep through the night we’ll be golden.

Daily I think of New Zealand and the great country that it is.  And how much it has done for my daughter.  How without it’s great people supporting us she would not have lived.  There’s no way Hamish and I could have paid for her surgeries and covered our living expenses while here in the US.  But because of the great people of NZ and it’s great public health system (yes I did just type that- it’s not perfect but NZers are VERY blessed) Aria lives today.

But of course our hearts sank when we read this.   It is a pretty stink thing to do to take money from a sick child.

Still we can’t let the actions of one overshadow the actions of many- a vast many.  And this isn’t even about just NZers but Americans and Australians and many other people from around the world that have helped and supported us.

We are so thankful to all who have donated to Aria and worked to gather donations.

We are so thankful to the KIDS foundation for supporting our fundraising and running our bank account.

We are so thankful to the Ministry of Health for funding her transplants.

We are so thankful to the two donor families who gifted us their child’s organs.

We are so thankful to our new American friends who have taken us into their hearts and loved us.

We are so thankful for both the Starship and UNMC medical teams who have fought for Aria’s life with their smart thinking.

We are so thankful to the readers of this blog and to the media organisations who have told her story.

And we are thankful to our friends and family who have supported us across the oceans.

SO you see- there simply isn’t space in our hearts for ill feeling towards this one person- it’s it overwhelmed with the kindness of many!

So many times in this journey I am reminded we are on God’s timetable and perfect planning.  He KNOWS.  He answers prayers with a no and gives us gifts we didn’t ask for.

Technically our goal and prayer for Aria trach removal was that she would come home on no O2.  In fact God answered our prayer with a no and the result is that she is on 24 hours O2.  It would seem like a failure……. Or is it?

Instead what we have now is a radically different Aria.  We are so amazed.  She is happier, brighter and more physically active.  Seems like the trach was holding her back and maybe obstructing her airway instead of helping her.  She was off o2 during the day with the trach but when she did need it it was at 3 litre sometimes more.  Now she is on .25- .5 litres 24 hours and doing great.

We are so encouraged.  Truthfully the past 5 weeks have been a bit tough at times with her behaviour and yelling for us.  But we are hoping this new happier Aria is here to stay.  We asked her if she feels better without the trach and she says YES!  very enthusiastically.

This whole journey has helped us redefine what is success and failure and what is good and bad.  If you have time read this short story.  And this verse.

Thank you friends and whanau for supporting us.

Aria’s and my sleepover went pretty well.  Not it terms of sleeping.  I mean who honestly expects to sleep in hospital??

Looks like she needs a tiny amount of 02 during the night, probably around .25 litres.  So not much.  Right now it is off and she is sitting up watching Mickey Mouse and she is sitting at 92.  She is also asking to stay another night…….  Er don’t think so Aria!

Turned the o2 back on.  Looks like she just needs a tiny whiff of it, it is probably on 1/8 of a litre and she is back to 97.

Hopefully we will get home this morning.  She still has a breathing treatment to do and we will probably stay for rounds.

UPDATE

Aria is sleeping and still doing fabulous.  Here is a picture of her trachless and happy about her new nail polish.  Please pray for a restful night for her and I.

Now all four of our immediate family members have celebrated a birthday in the US.  All four of us have celebrated them in hospital.  Stink.

Right now Hamish is in hospital with Aria who is still sitting at 100% on 1/2 litre (a low setting).  He let me come home to get some things and have a rest before I do the night shift tonight.  You see that is the kind of guy Hamish is.  He wanted to spend time with his daughter on his birthday, even in a hospital room AND allowed me to prepare for tonight.  Both done with a cheerful heart because he wanted too.

Hamish has been a father, husband, best friend and pastor to our family during these past difficult months.  His faith in God and his obedience to God’s plan and purpose for Aria’s life has been unwavering.   Even in our very very darkest moments I saw this.

Happy Birthday Hamish, I hope the next year we spend it on the mountain top rather than the valley.

Aria is full of character and spunk today, which has been a blessing and a trial.  Seems amazing to me for us to be back in PICU and have her yelling and smiling and laughing and fighting.  How many times did I see her lying in that bed lifeless, yellow and on the brink of…….  Well, it is amazing.

How Good is God?  So good that words simply fail me.  Honestly.  We mourned and now we dance.  We cried and now we sing.  She nearly died often and now she lives.  She lives and we live.

Trach is OUT and Aria is sitting at 100% o2 stats on 1 litre of O2.  Perfect!  A little surprised to be honest and so thankful!

Fought the nasal prongs pretty well like any 4 year old would but is ok with them now.

We dreamed it and today it came true.  We had the best time at the Omaha Childrens Museum.  We are so thankful to them for opening it up for families like ours.

Thank you Lord for blessing us.  We never would of believe we would of been home almost 5 weeks by this date.  You are a Great God!

First up- Aria has been out of hospital for FOUR WEEKS today!!!! YAY 😀

We had a really productive clinic today. Everyone continues to be very happy with Aria and her progress brings big smiles to everyone’s faces. Hamish and I had a few issues we wanted help with. First up, almost two weeks after pulmonary clinic we still haven’t made progress to downsize and cap the trach! Frustrating. We talked to the surgeon today and she said ‘forget about it, let’s just remove it- how does tomorrow work?’ Of course we would LOVE to get rid of it but panciked a bit and decided next week. So next week we will admit Aria for 24 hours and do a little sleep study and remove it at 9am and leave at 9am the next day. Maybe if we remove it Aria might not need any o2 at all. Something to pray for!

UPDATE: The hospital rang and it is coming out next Tuesday and staying overnight in the PICU, which is Hamish’s birthday 🙁 Feeling like we should of said yes to tomorrow. Perhaps we might have to celebrate his NZ birthday on the Monday!

They increased her fluid cause her HR has been up a bit and her labs look a little dry. And she lost 500 grams which is likely to be left over fluid.

She still had a rash but her EOs and WBC have been trending down nicely so that is great news. But they agreed to refer Aria to a paeds dermatologist so hopefully we might get some answers.

We didn’t get to have lunch with Emerson and Erika because clinic was running late but hopefully catching up on Saturday. Perhaps we might be able to have both miracle girls in the same room! What a picture that would be. They played a bit together today, it was pretty cool.

8pm here and I think it has been the hottest day of the year in Omaha Nebraska. It got up to 97 I think. Don’t know what that is in rest-of-the-world language, I can’t be bothered to use my Googlefu.

Super busy day starting at 7am with Hamish and Aria going into the Med Center for a blood draw. Normally a nurse comes to our house but because Aria needed a blood gas we had to take her to the hospital. AND she needed a tac/prograf/FK level and that has to be drawn at 8am.

Aria had a long nap over lunchtime. Her nights aren’t that flash and we are considering throwing the pulse ox machine out the window but don’t want to let the hot air in. Needless to say we still don’t think we are getting good readings. The nurse rang to update us on her blood gas and it was perfect. AND her blood o2 level was 95 on room air, excellent. But our stupid machine doesn’t agree.

For some reason managing the two kids was particularly challenging today. Frustrated I said to Hamish at dinner ‘how can this be so hard- there is TWO of us!’ He reminded me that we aren’t a normal family and we are dealing with two kids who are adjusting. They aren’t bad really – just…..well frustrating.

Tomorrow we have 3 appointments and a lunch date with Emerson and Erika. Another busy day. Looking forward to seeing the team and asking them if we can reenact the scene from Office Space except with our pulse ox machine and not a fax. But I have seen the rental bill for it, best we not…..