Leaving the station bound for……
Aria got a repeat CT this morning, Sunday. Â It looked about the same. Â We were hoping for improvement but there is none.
So tomorrow she is off to the OR. Â She will go under a GA for three things.
1. Â A bronch, this will extract junk from her lungs which hopefully will contain either a bacteria, fungus or virus or all three.
2.  A biopsy of her lymph nod under her arm.  This is to avoid doing a more invasive biopsy of her lungs.  This should take PTLD/cancer off the table.
3. Â A central line placement. Â If it is bacterial Aria will need a course of ABX and the leur in her foot/hands are a bit of a stink way to live for Aria. Â Maybe we won’t need it but it will be nice to have for IV treatments and bloods.
We are happy about this plan of action, it is now required. Â There is still hope that we will get to Disney although it is looking more unlikely. Â At least we will know either way this week.
Honestly, I am a bit heartbroken. Â Sounds dramatic I suppose but I am sad that Aria has to have a line again. Â Sad she has to be intubated again and scared she might not be able to be extubated afterwards. Â Scared we have many more days in hospital, our family is hurting. Â Sad we might miss Disney.
Asher and I are off to a birthday party today for our special friend Praja, knowing it’s not my party and I can’t cry if I want to!! Â Hamish got down to Lincoln to watch the Cornhuskers yesterday while Stephanie and her SIL Megan had Asher. Â We are trying to keep life going, thanks to the help of our Omaha friends. Â Carol and Cordell have Ash this morning, Â I had a bad night in with Aria so I was glad for the rest.
Aria is very very unlikely to have PTLD but it is yuck just to have the C word spoken in relation to her after all we have been thru this year. Â It is a big burden which I am handing over to God to carry- it’s too heavy for me!
23 Responses to “Leaving the station bound for……”
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# 31 Oct at 2:32 pm
Thinking of you and your family during these tough times and praying for the best possible outcomes xxx
# 31 Oct at 2:39 pm
Hi Anita, I know your heart is breaking but I also know you can handle this. You are a very strong person and your faith will see you through. Love is pouring in from all over the world directed at Aria and her family, relax and let that love lift you up.
# 31 Oct at 2:52 pm
No two ways about it – this stinks! Aria seemed to have come so far and then this. Hopefully it won’t be anything serious and they can get her onto the right meds quickly. Praying that you all know God’s peace today and expressions of his love from friends and family will lift you all up.
# 31 Oct at 3:15 pm
Praying hard, especially about intubation. Love you all (:
# 31 Oct at 3:36 pm
Loving you and praying for you lots
# 31 Oct at 3:49 pm
Praying that a clear outcome will be known soon.
God is indeed our strength and shield.
In the Redeemer
Tony
# 31 Oct at 4:18 pm
Can hear your heartbreak in your words. Nothing to say but hugs. xx
# 31 Oct at 4:45 pm
Aria will take this like the little trooper she is
and God will be right beside all of you so give all these problems to him. May you all find peace and answers tomorrow. Praying for needs.
# 31 Oct at 4:49 pm
My heart goes out to you all but what can I say. I know you are strong, but everyone has a breaking point – hope yours hasn’t been reached. A big lot of warm fuzzies for you all (hope you can give each other a hug from George and me)
# 31 Oct at 6:54 pm
prayers for healing coming your way.
as disney is being organised by make a wish, is there anyway of reschedulling the trip?
surely they must get situations where other kiddies & their families cannot fulful(sp) the wish at a certain time. after all, it is about sick kiddies, or kiddies with serious health issues.
before you give up on the idea of disney, why not check it out?
surely they can arrange something, so you, as a family don’t miss out, and aria can have her wish.
# 31 Oct at 6:55 pm
It’s not nice and it’s also not common in transplant kids – only about 3% according to my doc, because it came up for Lara in clinic last week when I was asking about certain tests for her. It IS terrifying just to think of it, but you must not think of C, they are just testing her and will be eliminating it from the question mark. I really want you to go to Disney too especially just right now when it will be all pretty for Christmas, you just don’t know, Aria may bounce back like a super star and be fine but if not, then it will just be a postponement and they will let you go on another date. I’ts ok to be angry and feel sorry for yourself and Aria (and ashie and hamish too), because its not a nice situation to be in limbo like this teetering both ways. It will get better.
# 31 Oct at 6:59 pm
Hi guys, we are continuing to hold you up in our prayers. Much love.
# 31 Oct at 8:53 pm
Our hearts go out to you all. Upholdng you in prayer for a mighty breakthrough.
# 31 Oct at 9:13 pm
I’m sorry that you are going through this Anita. I will keep on praying! God Bless!
# 31 Oct at 11:24 pm
Big hugs to you all. Sending Aria happy, strong, healthy vibes.
xxx
# 31 Oct at 11:40 pm
Oh dear 🙁 Hang in there kids. You are in very good hands.
# 1 Nov at 12:13 am
My heartfelt thoughts go out to you. I walk very close with you. It is a journey but not an easy one. I truly understand. Love to you all
# 1 Nov at 1:15 am
Hi MacDonalds. Samantha S has said it so well above. Anita I can sense your desolation in your blog. I hope this is just one of those bumps in the road you have spoken about so often on this journey. Praying you are back on that highway soon. You are all so strong and have it in you to rally when you have the down days. So many people have admiration for your resolution to be open to taking the different paths you have to explore with Arias care. Kia kaha xxxx
# 1 Nov at 2:36 am
praying for you all
HUGS
# 1 Nov at 3:53 am
Praying as always for you all, that you will have answers real soon and that you will be able to cope with sleepless nights. God be with you all. Judy.
# 1 Nov at 8:20 am
God is so close to the broken hearted – I love the way you just hand it over to our Papa. He is HOLY HOLY HOLY our Papa yet stoop down thru Christ to reconcile us to Himself. Today I throw it over to Papa I then remember “cast all your burdens to the LORD halleluia! He is so understanding – He gives grace to meet our need each time sister and brother. His grace is sufficient for us;
He will never leave us nor forsake us (Hebrew 13:5) Our sermon here at HONG KONG METHODIST CHURCH BY LADY PASTOR CHAMBERLAIN Romans 8:31-39 Earth cannot separate us from God, evil cannot separate us from Him, even Heaven cannot separate us from His LOVE revealed in Christ Jesus! Who can be against us? Not God not Jesus, thats all that matter!!! And so we can do all things thru Christ who strengthens us amen. Herewith we stretch our faith once again and againa until we finally come face to face with His Holiness, PRAISE HIM, HOLY AND MAJESTIC IS OUR PAPA AMEN!!!I LOVE YOU ALL PRINCESS ARIA, ANITA, HAMISH AND ASHE “BE COURAGEOUS”
# 1 Nov at 11:41 am
Praying today that answers may come soon and be good ones. May you feel his strength and presence.
# 2 Nov at 5:28 am
May the Lord give you quality sleep when you get a chance to rest your heads. Biggest hugs and my prayers to you.