News - Aria MacDonald

Two new tools are on the table today.  Dialysis and the Oscillator.

These were two things we were really hoping to avoid in Aria’s care and mark a decline in her health.

Dialysis is starting today to help pull fluid off her little body and allow her lungs to expand and work better.  It will only be successful if her blood pressures stay stable.

Her vent is on the highest settings and her gases aren’t good.  So far she is managing ok but it is an hour by hour thing.  We really really really don’t want her on the oscillator.  Like really really.  It is horrible.  So we pray she can avoid it.

The team believe these are reasonable measures and we are still working and hopeful that her life can be saved.  God can bless these tools even though we don’t want to use them.

We aren’t done fighting!  Aria isn’t done fighting although the battle is getting harder for her.

James 5:13-15

¹³ Are any of you suffering hardships? You should pray. Are any of you happy? You should sing praises. ¹⁴ Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord. ¹⁵ Such a prayer offered in faith will heal the sick, and the Lord will make you well. And if you have committed any sins, you will be forgiven

The pastor and an elder from GRC in Omaha can to pray over and anoint Aria yesterday.  Such an amazing and blessed time of prayer as we begged God for her life.  We were so deeply grateful they came to pray and lend us their hearts and voices to seek our God.

Please keep praying for us!  Please storm the heavens and seek God’s intercession in Aria’s life.  He can totally heal her!

The words of this post have changed so many times in my head.

Yesterday was a dreadful day.  Aria had yet another episode.  These episodes are scary and we know that they can mark the beginning of the end.  Once we stop being able to maintain her blood pressure and keep oxygen in her lungs and her little heart beating then the outcome of that is obvious.

You need to know we are struggling with this blog currently.  These are dark days.  Our previous dark days, when her first transplant failed and we waited for another round of funding, were not written about on this blog.  There was a sense of relief in that.  Honestly I don’t know what to say or how to say it.  I don’t want to be negative but I don’t want to give the impression that these are rosey times because misunderstanding hurts.

What happened yesterday is really horrible and I can’t bring myself to give details.  But I wish I could  because by understanding details you will know Aria is a fighter and a miracle occurred and the team is relieved.  But you will just have to take my word for it.

Aria can’t seem to get over the hump.  Like a speed bump she gets to the top and just can’t seem to make it over.  Her vent settings are really high (which before Tuesday were pretty low) and perhaps she is heading backwards.

Please keep praying for her, of course I know you will, thank you.  She needs to beat this infection.  Her bone marrow needs to recover.  We need to stop feeling like we are losing her, it is crushing, I don’t know how much more I can take.  God knows and is ministering to our souls.  He is not ready to take her, not today, we are pleading He doesn’t, not yet, not this way.

Aria continues to hang in there with this current infection. Not getting worse but not making much progress. Each day we hope to see a leap forward in her condition and each day we feel a sense of disappointment when we don’t. We would really appreciate your prayers for the two big issues with Aria at the moment, one for the short term, and one for the long term.

Firstly we would really like you to pray for her fluid status and getting off the ventilator. We are somewhat stalled at the moment in the process of getting off the vent with Aria carrying about 3.5kgs (7.7lbs) of extra fluid in her body. This fluid, especially around the lungs hampers Aria’s ability to breathe well and to properly oxygenate her blood and clear carbon dioxide from her body. We would dearly love for Aria to be off the vent again before Nana leaves next week, we think they would both really love that.

Secondly we really need prayer for the return to normal function of her bone marrow. She really needs this to get over this current infection and to have a good quality of life going forward. So far human means have shown little result, but we know the God of all creation can work outside these regular means, easy peasy as the kids would say.

Thanks to you all who support us with prayers, constantly keeping Aria before our Lord and Saviour.

Aria is in the NZ Woman’s Day this week if you are interested

Monday.  New week, new team.  Well same team just different bosses of said teams

Aria hasn’t made much progress over the weekend.  On Thursday it seemed like madness that she would still be on the vent on Monday.  But Monday is here and she is still on.

The main issue is her fluid status.  Still lots of fluid on her.  But she is peeing great and responding well to the meds.

Unfortunately she has been spiking low grade fevers.  And the cultures from 4 days ago came back positive on the 5th day.  This is unusual but it does mean the bug is weak and at a low count.  But it would be nice to get clear cultures soon.  They were taken the day her line was pulled so we are hoping things have cleared but the fevers don’t seem to suggest that.

Saturday was a difficult day.  She was crying a bit which was really hard to watch.  Her little face would crumple up and her vent would alarm as she held her breath.  Obviously you can’t hear her but her little eyes looked so sad.

Today I decided to go in with my listening ears on and my believing heart ready.  The message loud and clear from everyone is ‘don’t worry, she will get thru this’  ’you can’t see cause you are here everyday but she is improving’ etc etc.  No one is saying Aria is in trouble or she won’t pull thru.  Yes she is in a tight spot for sure but she is a fighter and her little body is fighting.  What with is the question cause she has no immune system!  God’s power is at work within her.

There is just so much sadness, like a heavy wet blanket wrapped around me that I just want to shake off.  I miss my girl!

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.