News - Aria MacDonald

Ephesians 2:8-10
The New Living Translation

⁸ God saved you by his grace when you believed. And you can’t take credit for this; it is a gift from God. ⁹ Salvation is not a reward for the good things we have done, so none of us can boast about it. ¹⁰ For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.

Let me start off by saying thank you for all the beautiful comments, encouragement and for the compliments on our faith and perseverance and parenting.  We really do appreciate them a lot.  But I just want to set the record straight on a few things.

We hear ‘you guys have such a great faith’ or ‘we are so glad you guys have your faith’ a lot.  It is true, we do have a great faith, but let me share with you, at least from my perspective, where it came from.

My childhood was spent attending a Christian school,  attending Girls brigade, attending church and sunday school.  I was deeply immersed in all things Christian.  I learnt a lot about the bible.  I memorised it.  I read it.  I sang it.  I knew it.  I am ashamed to say I was far to proud growing up about how much ‘bible stuff’ I knew.  But alas, I was given a great gift and so was Hamish.  I knew I was a far from perfect and in need of a saviour and that was Jesus.

I was also surrounded by people of faith in my church.  People who believed the bible was the word of God and lived it out.  I saw God provide.  I saw people having faith that God would provide.  People invested in me, although at the time I took it all for granted.  I am fairly sure my youth pastor spent most of the 1990s with a headache.   Talking to the stubborn and hurting teenage version of me would no doubt cause one to bang their head against a wall.

Once I got thru the angst of being a teenager I got to know my best friend better and we got married.  God was starting to turn that head knowledge around and make it heart knowledge.  But I was a comfortable Christian.  And in my opinion comfortable Christians don’t really make radical faith inspiring Christians at least not in my case!

So we were given another gift.  Aria MacDonald turned up and life got amazing and very uncomfortable.  In those early dark days all that head knowledge turned into a real deep reassurance of life eternal and that God was good and worthy of our complete trust and devotion.  God was and is very much at work taking our broken hearts and turning them into hopeful hearts.  He gave Hamish and I the same heart of faith- another gift. We know without a shadow of a doubt Aria and ourselves are heaven bound because of what Jesus did.

I am a control freak, micro manager who thinks she knows better than God and just wants to live a comfortable life.  God has taken that and made me trust in Him.  There are many days I want to pack it all in and trust in myself.  But I don’t cause God holds on tighter than I.

So my faith is a gift, a gift freely available to anyone and everyone who wants it.

John 3:16 ¹⁶ “For God loved the world so much that he gave his one and only Son, so that everyone who believes in him will not perish but have eternal life.

Yes I have a lot of bible knowledge but it is not just a book, it is a book that can be read and understood and it’s message is Jesus, God’s son, the saviour of the world.

Finally, thank you to the people who invested in me, teachers, friends, youth group/GB leaders, pastors, and extended family. Thanks also to the people currently investing in us here in Omaha and via prayer and encouragement in NZ and other places.   I don’t have permission to share their names on the internet but thanks to, among many, Mr T, A.Y and to P.B- I owe you a couple of packs of panadol!

Today was a quiet day.  That’s ok.  Aria’s fluid balance was positive 900 mls which means she was puffy today and her weight was up.  So as a result she didn’t make much progress on the vent due to more fluid around her lungs.  But she did response to the med to make her pee and shifted about 400 mls.

Later this evening her temp can up to 38 which isn’t good, hoping it doesn’t go higher.  We really need to get on top of these bugs.

Today we said goodbye to Erika and Emerson.  They are heading home to Colorado today which is super exciting for them.  Unfortunately for me I am saying goodbye to a friend.  Erika and I spend many hours talking in various parts of the hospital at various times, going to miss that.  True friends are hard to find, more so ones who understand first hand what you are going thru.  Thank you Erika, you are an amazing lady with an equally amazing daughter!

Today we also found out we are going to be saying Hello to our lovely texan friends soon.  Unfortunately in our medical world it may be under less than ideal circumstances.  Our Caed needs our prayers and his mom and dad do too.

Lots of emotions today!  God hears our hearts.

Phew, ok lets breathe.

Today things are better, things are turning around.  Her breathing status is better and they are even talking about extubating tomorrow if things go well overnight.

Talk about a rollarcoaster.  One day it feels like the sky is falling in and the next the sun is shining a bit brighter.  Partly because we just grab on to the good days and are keen to escape the feelings of yesterday.

Ok, it is going to be short and sweet because we are tired still.  But we did want to let you all know she is improving.

Thank you for your comments and prayers.  Aria’s condition is still delicate and long term things are unclear, please keep lifting her up and THANK YOU that you do.

Aria got worse last night and she remains septic.  We aren’t winning with this bug, not yet.

She is back on the ventilator.  The team worked really hard to keep her off using a cpap mask and breathing treatments but she just got tired and we had to intubate her.

Honestly, I believe she will get thru this and her bone marrow will be restored.  That is what I feel like God is telling me.  But I know that Aria is in a really bad place.  Bugs in her blood and no immune system to fight it.  Her passing into the arms of Jesus is something we are really thinking about and praying about and sometimes praying for.  As bizzare as that sounds, her current life is no life at all.

Do you know what I keep thinking- Jesus died for me, for me, for Aria, how amazing is that??

Really hard day, I am signing off.  Please storm the heavens for our girl, we love her so much and our world seems barren without her.  Even now.

First up- Aria is off the ventilator! Amazing news!  Unlike last time she flew and has done really well, no drama at all.

And we were able to remove her temporary central line and her foley catheter!  Two less infection risks!

AND we dodged the dialysis bullet too- kidney numbers improving and fluid shifted!

So some really good progress today, she is almost back to normal.

Unfortunately though she has been spiking temps in the early morning.  We found out today that her Steno bug has morphed and has become resistant to the antibiotic she was on.  So they have switched ABX but it is disappointing because this bug is already quite resistant in it’s natural state.  They have to source the ABX from the East Coast as it is not readily available in IV form.

Aria did well after we pulled the vent.  But pretty soon she got sleepy and complained of a headache.  The day she got sick she was complaining of bad headaches and we gave her a dose of morphine.  So we are quite disappointed they are back and still don’t understand why she gets them.  They are quite bad and she can’t sleep until she has pain relief on board.  It is hard to watch your kids in pain.

Lots of reasons to praise!  And lots of reasons to pray!

Thank you friends for checking in and supporting us.

Aria’s progress has unfortunately stalled in recent days.  We haven’t turned the corner yet.

The main problem is her kidneys and the huge amount of fluid she is carrying in her body.  When the body suffers a traumatic event it gets overly excited and sends fluid everywhere.  Like when you sprain your ankle and it puffs up.  Except Aria’s body doesn’t know where the injury is so it sends fluid everywhere.  It is called third spacing.  While her body is carrying fluid, intravascularly she is dehydrated, the fluid is sitting in her tissue and not where it is suppose to be.  Her her kidney numbers are really high and asking for more fluid.

So we need to move that fluid out of her body, particularly around her lungs so they can expand properly and she can get off the ventilator.  So they are giving diuretics to help her pee.

The day before things were looking quite bad and her kidneys numbers going up and up.  Dialysis looked like it was on the cards and that is not some where we really want to go.

But yesterday one of the docs popped in and said that Aria’s noon labs looked like they were slowly heading in the right direction.  Like a big ship we are steering it in the right direction he said.  To which I chimed in and said ‘yeah like the Titanic and we are hoping not to hit the ice berg or the dialysis machine’  He laughed and said pretty much.

So a week on Aria hasn’t turned the corner yet.  One of her line cultured positive for Steno still again yesterday, the bug she is battling right now.  But that line was removed yesterday so that will really help.  But overall she is doing well for someone who is septic with no immune system.  Septic events often lead to death with people with immune systems.  They are very serious.  Praise God for what He is doing in Aria, it is a miracle, again.

Yesterday she was awake for a bit and was nodding and shrugging her shoulders when we asked her stuff.  It is the first good sign of her personality in a week.  She is still there and fighting!  Praise God.

Aria keeps progressing every day!  Today her liver number are almost normal.  Phew!  Last week they were so bad they were thinking of biopsying her liver- today they are improved heaps.

She is still on the vent and will be for a few more days, maybe into the weekend.  Which means her birthday is on hold.  It feels really hard, we had such high hopes for her 5th birthday!!  Turning 5 is kinda a big deal in NZ and we were keen to celebrate.  Still it doesn’t matter to Aria that we celebrate on a different day.  It just seems wrong and unfair to have a party without the guest of honour!  And how does one party when they are sedated and can’t speak with a yucky tube in their throat??

So we ask– could you please hold the Happy Birthday’s until we let you know when we are going to celebrate.  Mainly to spare our hearts, it is hard when everyone else is saying Happy Birthday yet we are trying to forget the pain that is having to delay her birthday again.  Thanks friends!

I spoke to the surgeon on this week about Aria’s long term prognosis.  They still have tricks up their sleeve to treat Aria’s bone marrow suppression.  Nothing extreme is on the cards and we pray we won’t need to get there.  Her ANC is 115 today!  Something, a tiny glimmer after days of zero!  It is something and we are holding on to that as a sign from God He is active and present!!

Today is Memorial Day in the US, kinda like ANZAC day.

Another day of progress for Aria.  All the pressers have been turned off and she is maintaining her own blood pressure just fine.  Her chest xrays look a bit improved too. She is peeing a heap, around 100mls an hour!  Great stuff.  Her vent settings were up a little bit this morning and they changed them around late morning and she did well.  Hopefully we can be more aggressive and start weaning tomorrow but we will see.

They have her very sedated.  We don’t really see any signs of life from her, she is very asleep.  She coughed today, as much as you can with a tube down your throat.  But no other movement from her.  That’s fine she needs to rest and recover but I miss her.

The bug that was cultured in her lungs was cultured in her blood too.  But she has blood sepsis too, so again it is amazing she is progress like she is.  They are treating it with an oral ABX because the IV version isn’t made anymore, bummer.  IV would be better but oral will do.  She seems to be absorbing well so it shouldn’t be a problem.  She had a little temp of 37.8 but hopefully nothing will come of that.

On Friday I felt physically sick, couldn’t eat and when I did I felt ill.  On Saturday I felt nervous and optimistic.  On Sunday I felt relieved. Today I just feel sad.  Sad that Nana is here and Aria is missing out.  With Aria being so sedated we are home in the evenings.  She gets excellent care on the PICU so we feel like it is the right thing to do to take a break.  On Saturday we enjoyed the first home cooked meal as a family for almost two months.  Except we weren’t a family, someone was missing and it felt bad.  Felt bad to be ‘enjoying’ home life while our daughter was lying in the PICU and we long to be with her.  Sigh, there is never a easy way.

Words are really powerful.  Particularly in our situation.

Hamish posed a statement as a question to the surgeon today, along the lines of ‘so she is doing well…..?’  He said ‘yes’ and then qualified his statement with ‘actually she is doing remarkably well’.

First thing Friday morning after they got her stable his first words of advice to us on rounds was ‘Pray’  Aria needed prayer.  You- friends, family, blog readers prayed and God heard and answered.

Aria is down to one pressor med at a low dose and her blood pressure is doing really well.  We have been able to wean her vent settings regularly.  Today we are giving her a med to help her pee to shift the 3 litres of fluid she was giving on the day she tanked.  Once we shift the fluid on her chest her lungs will be able to work better and hopefully we can remove the ventilator.  It will take a couple of days.

We have cultured a bug in her lungs that she hasn’t had before but is naturally quite resistant.  But it is sensitive to three ABX and the Infectious Diseases team seem confident they can knock it on the head.  Kinda of thankful it isn’t her Pseudomonas back.  And it means they can take her off the other ABX they had her on.

Still though, it makes ZERO sense that she has recovered so quickly given her ZERO immune system even on the right ABX.  But when you factor the power of God into this it makes TOTAL sense.

Words are really powerful.  Thank you to everyone who left a comment or sent us a private message.  Thank you to all who offered up words to God.  They are the most powerful of them all.  Please keep praying, we are winning a battle but there still is a great war to fight.

Aria is back in the PICU on the ventilator.  Unfortunately unlike last time it is suspected she has an infection in her blood rather than a sharp shift in her fluid balance like last time.

Aria’s ANC is zero, which means she has ZERO ability to fight off this infection.

Yesterday she was stable and today it appears she is making progress.

Kids in this position can often crash very fast and often there is nothing that can be done no matter how hard the team work and what drugs they give her.

Yesterday things were really really tough.  I went in at 5am at the ICU Attending was trying to get an art line in (an IV which constantly measures her BP) and as they were trying to keep her BP stable.  I knew how touch and go things were.

Over arching this situation is her long term prognosis.  There was supposed to be a meeting yesterday with the transplant team and oncology in light of her recent bone marrow biopsy and complete lack of ANC.  But that was put on hold because of this episode and our need to just focus on today.  We don’t really know what treatment options are left for Aria and how extreme they may or may not be.  It isn’t something we really want to think about or discuss on this blog or in person, we just need to get thru this event and then we will face it.  But there may be some very hard decisions in our future.

By rounds yesterday I had worked myself up into a bit of a state and then as the surgeon walked in I just burst into tears.  I was so afraid of what he was going to say.  But he was really kind and he used the words ‘recoverable’ which surprised me.  I was prepared for a grimmer message.  The message from him and other senior team members is that we are not done fighting for her.  But he would tell us when they are done and they will always respect our wishes.

Hamish and I are in constant prayer and constant discussion about God’s work and plan in Aria’s life.  We really really plea with Him that He spares Aria’s life and restores her bone marrow either thru medical intervention or a miraculous act of mercy (or a mix of both).  We plea with Him that we don’t have to make any decisions to withdraw life support or decline treatment options for her.  But we fully give her over to Him knowing fully she is heaven bound into the arms of Jesus. We plea that He makes His will crystal clear for Aria.

Before rounds yesterday I received an email into my inbox from a friend updating us on a decision she had been struggling with God to make.  She quoted this verse:

James 1:5 (New International Version)

⁵ If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.

This brought such comfort to my heart.  Even though we don’t want to make decisions God will give us the wisdom to do so, if we get to that point, because we ask Him.

Nana is coming tomorrow, thankfully a day early!  Asher is excited and so is Aria.  We told Asher yesterday that Aria is really sick.  He said ‘Aria on number 5?’  Number 5 is the level that the PICU is on.  He is getting more knowing.  Not sure whether to let him see her in this state or not.  Maybe not.

But for today God is healing her and she is progressing, that is all all we need for today.  Because tomorrow has enough trouble of it’s own. Matt 6:34