2011 June - Aria MacDonald

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!!