Tuesday
Today Aria took a couple of steps backward.  She is back down in the PICU and they switched her over to hi flow O2.  Her and I had a rough night.  She would de sat down to 80% and would wake up and panic a bit.  Fair enough, it wouldn’t be fun at all.  She would manage to breath her way out of it but it took hard work.
They started an IV today in her hand to give her a top up of something I can’t spell. Â And so they decided to give her IV ABX and anti fungal. Â We are told that if it is indeed a fungus in her lungs then we won’t see an improvement for 5-7 days 🙁 Â That is disappointing.
You might be wondering how she managed to get fungus in her lungs.  Apparently depending on where you live the US different things float thru the air.  Unfortunately in Nebraska and surrounding states there is a lot of fungus in the air.  It doesn’t matter to much unless you are immune suppressed like Aria.
There was no bronch today. Â We are still hoping the tests are positive on Friday and/or she starts to improve on the various treatments. Â Everyone is super keen to avoid a bronch as it could very well end up in a week of intubation for Aria based on her history and Disneyworld would be off! Â But if we still don’t have answers and improvement then it will have to be done.
Overall though, she looks great. Â She is laughing and happy. Â Playing and painting and having fun. Â She peed well and is looking less and less puffy. Â Yay!
It’s tough.  Yes compared to what we have been thru this year it should be a cake walk.  But it isn’t.  It is still hard.  In fact based on what we have been thru this year perhaps it makes it harder.  I don’t know- that doesn’t make sense.  In the scale of ‘badness’ this is about a medium.  Trying to keep that perspective.
The past couple of days I have been really wrestling with fear and the prospects for Aria long term. Â Really examining my faith and asking myself if I really living out the truths of the bible to not fear the future and to really commit her life to Him. Â Unfortunately the further I get away from those intense days were we lived in the palm of God’s hand hour by hour I forget and start to doubt. Â Little things I read or watch shake me. Â Anyway- just a bit of honesty from me. Â It is easy to say ‘trust in God’ it is harder to live it. Â But God is good and sustains us thru these bumps in our faith.
My sister just sent me this verse, I think it is really appropriate for the struggle above.
“Surely goodness and mercy shall follow me all the days of my life… ” – Psalm 23:6 NKJV
Please pray for Aria. Â Please pray she might improve very soon. Â Please pray for Hamish and I as we get little sleep in hospital. Â Thank you!
15 Responses to “Tuesday”
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# 26 Oct at 8:20 pm
Praying for Aria and for your faith. God knows we are just dust and frail human beings. Just keep on going back to Him whenever you have trouble trusting Him. He truly is faithful to carry you through it all. (I know this from personal experience…) Hang in there. He loves you so much and never leaves or forsakes you. Let Him hold on to you when you can’t find the strength to hold on to Him. Sending my love and prayers for you all.
In His great love,
Carolyn O’Cain
# 26 Oct at 8:23 pm
Dear Anita
Dear Anita, My heart so went out to you today. Trusting God with our children is the hardest trust of all. So many times I have felt discouraged, feeling my faith was weak because I still harboured fears for my children. And I have never been through anything remotely as harrowing as your journey. When my fears are at their worst, the one scripture I take comfort from is the Lord’s promise that He will only give us what we can bear. There will always be a way out of our fear and our pain. Sending you and Hamish and both your beautiful children love and prayers; from Vikki.
# 26 Oct at 8:34 pm
Just know there are many lifting you all up in prayers. Our God is faithful and I ask him to give Aria healing and rest for the rest of the famiy.
Praying still.
# 26 Oct at 8:47 pm
Anita, our hearts go out to you, and Hamish as we read your updates, us and our ladies (that is our coffee and craft group)pray for Aria and you both and will continue to bring her and these bumps in the road before the Lord. It is understandable that sometimes when circumstances abound that we just can’t comprehend we let our faith slip or we question what is happening. God understands that too. He understands the needs that you and Hamish have too just give it to him. He will hold you.
Asking the Lord to guide you both today with with His Love and Strength.
Lois
# 26 Oct at 9:06 pm
Every day! It’s so easy to become disheartened but think how far you have come and it did my heart good to hear that Aria is still able to laugh and be happy under these circumstances. NEVER doubt that what you have done is right. Just look into Aria’s smiling face and rejoice.
# 26 Oct at 9:15 pm
Oh Sweetie! I hear you and I understand. You thought the worst days were the worst right? Believe me when I say that some of the minor bumps make your heart stop beating even more. But strangely this is progress even if it doesn’t feel like it (for you I mean). You have all started to get a normal life back and so these bumps mean even more than before because you have got ‘tasters’ of what it should be like and yet you still ‘remember before’. Don’t ever feel like it is a weakness or a lack of faith, it is growing and healing, even if you can’t feel it yet. For me it felt like we were continually being ‘tested’ or kept ‘alert’ but in hindsight I am grateful, it made us vigilant and appreciative, even if I sometimes lived each day in fear of what might happen for so long.
I know everything is still fragile in these early days but Aria shows you her true self every day and that is that she is getting stronger and stronger each day. She will have backward steps, as she progresses forward and her body adjusts and copes with all the things normal kids would shrug off. Each day you have her with you to love and cherish is a day to celebrate and be thankful for.
Your faith is terribly strong, and even your doubts show how strong you really are. The mental/emotional/spiritual balance is hard to achieve and god doesn’t expect perfection, just trust. Love you heaps xxx
# 26 Oct at 9:24 pm
Just prayed for you all with Lyla. I remember the horrible feeling I felt when I checked Evie in for surgery in July, after not being hospitalized for months, so I know how you feel. I felt like an abrupt reminder of her condition was thrown right back at us after feeling a sense of normalcy for a few months. Praying for no bronch. Love you guys
# 26 Oct at 9:55 pm
My prayers are with you, as you seek to find answers about Aria’s lungs! I hope that she will still get to go to Disney World, but more importantly, I hope she gets better and stays better! You have been through so much. God understands we are weak and frail, and we tend to doubt sometimes, but He’s always there to catch us when we fall. I pray God will give you peace in your heart, through this time. God Bless!
# 26 Oct at 9:56 pm
Your honesty must just thrill God’s heart. You can’t hide anything from Him anyway, so He deeply appreciates that you tell Him what He already knows instead of pretending you are on top when you’re not. He understands and is right there for you. Lean all your weight on Him and relax in His arms.
Lots of love
# 26 Oct at 11:00 pm
Hi Guys, just wanted to let you know I have been following Aria’s progress intensly for the last 4 years. I do keep in touch with GLAMma Christine – she was my daughter’s first pre-school teacher. She knows me of old & knows that Billy Fury is my GOD! (Sorry)! My heart goes out to you & your family. Anything I can do to help – I WILL (Billy Fury song). IN THOUGHTS OF YOU (another Billy Fury song)! XXX’s & Hugs for Aria.
# 27 Oct at 12:20 am
This morning the only words that comforts are “daddy, daddy, daddy.” His grace is sufficient for us amen, amen, amen.
# 27 Oct at 12:44 am
Upholding you all in specific prayer. There are so many scriptures at this time which are encouraging. It has been a very hard road but He is right there beside you all the way …” Ah Lord GOD! Behold, Thou hast made the heavens and the earth by Thy great power and by Thine outstretched arm! Nothing is too difficult for Thee†(Jeremiah 32:17)”.
You are the most wonderful parents and we thank the Lord he has entrusted Aria to your loving care. God Bless
# 27 Oct at 2:20 am
Sometimes – actually quite often – words can seem totally useless. I have a scrap of paper up on our kitchen door with this on it: GOD IS TOO GOOD TO BE UNKIND, HE IS TO WISE TO BE CONFUSED: IF I CANNOT TRACE HIS HAND, I CAN ALWAYS TRUST HIS HEART. (C.H Spurgeon).
Continue to uphild you – and al the people caring for Aria – in prayer.
# 27 Oct at 3:15 am
So many wise words above, I could not really add anything further but I do feel I intuitively understand what you are saying Anita. I will keep you all in my prayers. So heartening to hear that Aria, wonderful little girl that she is, is remaining cheerful and positive through this patch of choppy water.
# 27 Oct at 7:14 am
I agree. So many have already said what is on my heart. Praying for you all…………….LOVE YOU BUNCHES!!!!!!!!