Not Home
Just after I published this post, I read my sweet friend Lindsey’s blog, she posted these verses that pierced my soul.
2 Corinthians 4:16-18Â (New Living Translation)
16 That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. 17 For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! 18 So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.
It was discharge day yesterday.  The team gave us the opportunity to leave or stay another night.  They switched Aria from an IV ABX to an oral ABX and that combined with another oral med she is on can cause irregular heart rhythms.  So she had to have an EKG that afternoon and then another one at 7am today.  So it made sense to stay another night rather than just have to troop in again in the morning.  Plus she had an appointment with the dermatologist at 10am so we knew they would discharge us first thing.
Unfortunately her daily labs showed that her potassium was really high, which can cause big problems for the heart, thankfully an EKG was already scheduled which came back clear. Â And her bilirubin, which has been high for a few days keeps climbing.
After a bolus of IV fluids her potassium was still high this afternoon.
There were a bunch of differenct theories thrown around, thankfully the major and concerning one was ruled out. Â But as things sit tonight we have NO IDEA what is causing these issues.
There was talk of home tomorrow but I seriously doubt that is going to happen given these new issues.
Aria said this morning ‘Uh-oh, what time are we going home?’ Â Asher said as he was getting in the car after daycare ‘My sister be home when I get home’ Â I totally kicked myself for telling them home was on the horizon but they both took it pretty well. Â Aria listed off a bunch of things she likes about hospital and Asher asked to go to McDonalds.
Hamish and I are pretty gutted. Â So much for not getting our hopes up! Â Tears today. Â Crying out to God. Â I feel like things are unraveling and we are just completely losing control of this whole situation. Â Which we are of course. Â I don’t know what God is doing. Â I really don’t. Â It takes all my strength to hold on, to keep going. Â When will this end? Â How will it end? Â It will end. Â He will complete the good work He has started.
22 Responses to “Not Home”
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- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
The hospital that takes great care of Aria - The Kids Foundation of NZ
The wonderful charity that supports Aria
# 19 May at 8:04 pm
Praying tomorrow will be a brighter day. Stay strong, and trust in Him.
# 19 May at 8:07 pm
Anita, My daughter has been memorizing a verse and God keeps laying it on my heart for you. “Hear my cry, O God. Attend to my prayer. From the end of the earth I cry to you. When my heart is overwhelmed, lead me to the rock that is higher than I.” Psalm 62:1-2
May God hear your cry from what seems the end of the earth and give you peace that passes earthly understanding.
Sarah, friend of Lori Hollingsworth
# 19 May at 8:31 pm
We at the children’s hospitaltgis morning with our 3 year old
Son who also has HIrschsprung’s. He is ok it
was (thankfully!) just a check up and check in. The whole time we were there though I found
Myself thinking of you, Hamish,
Aria and Asher. I’m grateful for your posts — you have no idea the positive impact these have had over my life and over my faith! I will continue to keep your family
In my heart and prayers.
# 19 May at 8:48 pm
Praying for strength and endurance – God’s timing is always perfect even though it often seems too slow!
In Christ
Tony
# 19 May at 8:59 pm
Whatever, whenever, wherever, God’s still there.
I keep thinking of a song written and sung Amy Roberts the Irish singer: The chorus goes like this:
You’re still God
When my eyes have cried a million tears
You’re still God
When my last hope has disappeared
You’re still God
And I know you’ll make a way somehow
You’re still God
And you’re holding me right now
# 19 May at 9:17 pm
What beautiful words to that chorus.I pray that you will find peace somehow thru all of this. It has been a journey most could not have done. It too have been so touched by your faith and blogs. It has been a witness to me in so many ways. All I can do is lift you all up in prayer but God can do all things.
# 19 May at 9:20 pm
For the vision is yet for an appointed time and it hastens to the end [fulfillment]; it will not deceive or disappoint. Though it tarry, wait [earnestly] for it, because it will surely come; it will not be behindhand on its appointed day. Habakkuk 2: 3
Sending our love and prayers that you will know His strength and sustaining love and power. Believing always for a breakthrough. xx
# 19 May at 9:54 pm
My heart goes out to you this is such a hard journey to be taking. Love to all take care and keep strong. Easier said than done I know.
# 19 May at 10:50 pm
Psalm 147:3, He heals the broken hearted and binds up their wounds. Let it be soon dear Jesus!
Hopes dashed again. I weep with you and keep holding on to His Word that can always be trusted.
With love from Auckland.
# 19 May at 10:54 pm
In Thoughts Of You – Billy Fury song. Keep strong. M x
# 19 May at 11:24 pm
God be with you all and guide and keep you safe in his loving arms.
# 20 May at 1:19 am
Some days just suck don’t they! And then the next good one feels extra good somehow. You sound totally wasted Anita. Biggest hug.
I recently heard someone talking about faith, hope and love and that they are like a three legged stool. Take one away and we fall over. So Anita and Hamish, I along with everyone who is praying, we give you our love, hope in our good Lord, and we will stand in God’s promises on your behalf with faith, knowing that the Lord is in the middle of this. We don’t understand it all but we can stand together, believe in Him on your behalf, and love you guys through this.
# 20 May at 1:21 am
My heart hurts so much for you both, and the only thing I can think of to post is a scripture that I cling to often. It is a bit much for some people, but I find it reassuring – an amazing example of one man’s trust in his beloved God.
“Though He slay me, yet will I trust in Him: but I will maintain mine own ways before him.” Job 13:15
One day, SOON I pray please dear God, everything your special family has suffered through will be OVER and will make sense.
# 20 May at 4:42 am
God sent His Son they called Him Jesus,
He came to save,heal and forgive,
He bled and died to buy my pardon,
My life is worth the living, just because He lives.
Because He lives I can face tomorrow,
Because He lives all fear is gone,
Because I know He holds the future.
My life is worth the living,
Just because He Lives.
# 20 May at 6:39 am
Oh how lovely the way children react to not so good news, one counts blessings about hospitals the other counts blessings of food, seriously Anita whatever comes, Father is still in control, praise His holy Name. Stand tall and count our blessings love you lots praying with you for sunshine in the morning amen, amen, amen.
Whats that dance that christians used to do years ago, two steps forward – one step back – oh i think its the FOXTROT, LAUGH!!!IS BEST MEDICINE.
# 20 May at 7:53 am
Anita, learned about Aria through Lindsey’s blog. My heart and prayers are with Aria. I pray that she will get through this rough patch and will soon be up and running around again soon. But let all who take refuge in you rejoice; let them sing joyful praises forever. Spread your protection over them, that all who love your name may be filled with joy. For you bless the godly, O Lord; you surround them with your shield of love. Psalm 5:11-12.
# 20 May at 8:53 am
What amazing children you have! What amazing parents they have! So sad for you that discharge did not work out. Just praying for you and please let us know what we can do to help.
# 20 May at 8:56 am
Hopefully today will be a better day for your family, and that the doctors will find out some answers for you! praying God will give you peace, strength, and comfort to face the da ahead of you. God Bless!
# 20 May at 5:06 pm
“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” Isaiah 55:8-9
Praying still for the strength to keep going in this great journey you are on. So sorry to hear how much you are struggling right now and praying that home won’t be too far away.
# 21 May at 10:39 pm
Hi – don’t know what to say, but sending much aroha & prayer xx
# 2 Apr at 1:19 am
Love being here, Terri. Thanks for having me!
# 21 Jun at 9:04 am
Hello colleagues, its wonderful post Not Home – Aria MacDonald concerning cultureand entirely defined, keep it up all the time.