Sounding board - Aria MacDonald

Sounding board

I need to move on and you are all my sounding board, as well as a chat with Rebecca at 5am this morning.  Yay for NZ being 7 hours behind!

This week has been TERRIBLE!!!!  Bad- epically so.

Honestly we could type all day and night and never really fill you in on everything.  This week started with the passing of our next door neighbour in PICU, Valeriana.  This little girl battled thru a great journey and went to peace on Monday.  Her parents had become our friends and Asher LOVED their older daughter, as did we.  We are sad for them but chins up and proud as they would say.  Val’s mum and dad were inmates with us, co-workers, prisoners of this war we fought together.  Same with Almariah’s mum and dad.  I learnt so much from these families on life and faith and courage.  We will totally miss them and always remember their sweet girls.

Now we still here with Aria, in a critical but stable condition.  She has never ever been this sick in her life.  Even between transplants she was ok, obviously needs new organs but she was maintaining herself.

Truthfully I just don’t know what to think.  Between transplants felt worst to me, we were not sure which way God would go.  This time it doesn’t appear to us that He is planning to take Aria, no one here is concerned she won’t recover from this.  But this is a significant setback in her recovery.  Because this has seemed to mainly effected her lungs I wonder what the last impact of this will be and how much longer she will be on the vent for.

She is stable which is good.  She didn’t make much progress overnight and one of her vent settings went up.  One of the biggest things is her fluid status.  She is 21 kgs and HUGE with fluid which inhibits breathing.  But her kidneys are grumpy so aren’t peeing much, but doing just under the minimum, about 1 per kg per hour.  Not enough to shift the litres of fluid she has to get rid of.   They don’t want to do dialysis just yet which is fine, we are totally ok with that.  But if those kidneys don’t start soon….. Also her FK/tak/someother name/anti rejection med is high which also makes the kidneys mad.

She is on dopamine which is a drug to keep her BP stable.  She isn’t maintaining it herself.  They dropped it to 18 from 20 but haven’t been able to move further from that.  But we aren’t getting the dips we used to.  Today we gave her a full bath and changed her sheets and she was all good.  Some kids you can’t even touch them because their pressures will drop.

She has tested positive for the common cold virus but surely that couldn’t of done this.  And the fluid from the belly taken in the OR has tested positive for the dreaded Pseudomonas but we will wait and see what happens with that.  We have no clear answers about what has caused her to crash like this.

The second part of her doco aired yesterday on TV in NZ.  We haven’t seen it but hear it is good!  NZers can watch it HERE if you missed it.  We had a huge response to it and we so thankful people are so kind.  It means a lot to have voices in this journey.  We know there are people that read this blog but don’t comment.  That’s fine too, we know you are there and don’t know what to say or don’t want to post in public.

Finally we have haven’t commented here on the application for the top up of funding.  We have been nervous about negative responses so wanted to give it some time and have avoided negative media who have sought to make this an issue.  I trust Attitude very much and I don’t know what aired but I will say this.  We had the firm support of the team here and at home, everyone was in agreement a 2nd transplant was the right thing to do and Aria would walk away from this with quality and quantity of life .  We could not turn our backs on a 2nd chance for Aria simply because of money.  We are truly deeply and forever thankful to the MoH for backing Aria again.   New Zealand is a truly wonderful country and it’s government is good.  I know that a 2nd chance wouldn’t of come so readily if she had been born some place else.

Anyway- there is a LOT of stuff in this post.  Stuff I have wanted to say for ages.  Thanks for listening.

33 Responses to “Sounding board”

  1. Tina Coleman says:

    I’m praying for you Anita! For you and your precious family to feel God’s presence like never before. To have a sense of peace. I’m glad you can use this blog as a sounding board–a way to express yourself! Just know that there are lots of people praying for you–those that respond and those that don’t. Those you’ve met and those you will never meet this side of heaven. It’s all good and we know our God is AWESOME and He is FAITHFUL! So cling to Him! and hang in there.

    Love you all

  2. kelsie byford says:

    we are continuing to pray for aria. i hope things begin to look alot better real soon. i read every post but dont always comment because i’m not sure what to say sometimes…i went through my daughter being on the vent too for about 2 weeks and it was…so hard, i can only imagine how u guys feel. but i do agree, u do really eventually have a “peace” about things and accept whatever happens. and something that really hit home with me the other day was when u said ” i have given her over to god” …thats exactly what i thought and did too and he decided that mallorie had more things to do and preach about!!! :) so he saved our little girl and i could not be more grateful for everything little thing….. love to u guys!

  3. joyce says:

    Thank you so much for sharing everything with us. It makes me feel like I am a part of your life and helps direct my prayers. Long hospital stays make you part of the other family’s joys and sorrows. Please just know we complete strangers in the U.S.A. are with you in prayer and trust Aria to her Jesus.I so admire you both as parents who have chosen this journey in spite of the difficulty among strangers.

  4. Tiffany Keller says:

    You can count on my prayers Anita & Hamish! God Bless you today!

  5. Christine MacDonald says:

    Continuing to pray for our precious Aria, and for you, Ham and Ashie. Psalm 62:5-8 love this verse that Shirley shared on Samuel’s blog. lots of love

  6. Fran and Dan says:

    Cannot put ourselves in your shoes, its hard enough when your kiddies have an accident or get a bug or something and are poorly.

    Our hearts go out to the family who lost their little one bless…

    We all have huge shoulders which are here to be used.. I have huge ears too xxx

  7. Cheryl says:

    Thank you for being so honest and sharing your story with the world. I don’t know you but I would love to extend a warm hug to you. Love and Prayers from NZ – Kia Kaha

  8. Helma says:

    We watched Attitude last night, it gave such an insight of your days, Anita and Hamish you do such a good job for Aria, I have a deep respect for you and I know it is God working/shining in and through you. May He continu to give you strenght and grace for each day. You are such an ambassador for Him! Lord please continu to carry them through the days. Ps 91:4 He will cover you with his feathers, and under His wings you will find refuge; His faithfulness will be your shield and rampart.

  9. jen says:

    praying for a better week this coming week
    my thoughts and prayers are with Valeriana’s family

    my prayers as always are with you all especially Aria

    HUGS to you all
    I care :)

  10. Julie says:

    So sorry to hear about this rough time at the moment. Praying she will make it through safely and for you all at this time. Great to see you all on TV yesterday. Kaitlyn “knows” Aria quite well now and really enjoys watching and hearing about her. Love to you all.

  11. Leticia says:

    Just watched the Attitude episode on little Aria. You are such an amazing mum to both your children. You are an inspiration. May God contiune to bless you richly and shower you all with the desires of your hearts.

  12. Patricia Goldfinch says:

    Hey guys, I watched Attitude yesterday and it really was grounding to see what you go through daily (even if only a tiny moment)
    I don’t enjoy my job at the moment but seeing what my taxes go toward makes it all worth it!!! When you were shopping for Ashers bday present I wanted to yell at the tv and tell you to buy something for yourself too because you deserve it:-)
    And you all deserved the funding top up because that’s what the MoH is for so for any one to be negative about that will be really disappointing.
    So take care, and big hugs xoxo

  13. Mrs Rona Rossiter says:

    Hi there i was just watching the attuide programme and saw the story of young aria that so bought tears to my eyes im a mother of 6 kids and grandmother 2 and another one on the way you have a lot going for you your a very brave family i watched how you talked about your daughter the inmotion in your eyes how it was hurting so much.My last son whos 13 was born with a hole in his heart the first thing i said why me my family took it hard traveling to and from auckland for test and scan because whangarei didnt have the support here.I want to say you keep in there and hang tight all us new zealanders are behind you 100/%you ever get lonely or just need to put thoughts down just send me email i will listern give our love to your darling daughter aria and big hugs and kiss to the family love from the rossiter family,god bless yous all.

  14. Erena says:

    Just watched the Attitude episode on little Aria. You are both amazing parents to both your children. You are an inspiration. Our thoughts are with you all. Keep strong Aria..

    Johnston Family, New Zealand

  15. Bracefield family says:

    The Attitude program was really good in showing how things are for you- so glad they could show it as it is hard to know with you all so far away. Really sad to hear of the latest setback. Have been praying for you regularly as a family and at church too. May God strengthen and uphold you all

  16. Lisa Robertson says:

    Attitude did cover the 2nd transplant top up funding issue, and presented it well, coupled with you Anita making clear how grateful you are for the support of your country in fighting for Aria’s life. I think Attitude really do present Aria’s journey beautifully and I love that they keep it true to you guys with your Faith.
    So sorry to hear things are so tough, I wish there was so much more we could all do to help you guys out. Hang in there for those easier days. Sending tons of love to Aria and you all. Lis xxx

  17. Liz says:

    My thoughts and prayers are with you. Aria is a special little girl I watched attuide all the time.

  18. Ali/nerdygirl says:

    Hey guys
    Just watched the Attitude episode – they did a really good job representing the funding application fairly and accurately. Well done them. Oh! And Ashie!! What a guy! I love you guys, I wish I could be of more practical help. These are some pretty horrific bumps on the road that you are having to deal with, but I believe Aria will make it through.

    With love as always,

    Ali xoxo

  19. Louise says:

    Lots of love and prayers…always thinking of your family and Aria.

  20. Samantha Sutherland says:

    I’ve always felt very strongly that Aria would come through this. Putting that aside for a moment, I know that no one can predict how a child will cope what is thrown at them. Some kids have a transplant, recover well and two weeks later are at home living normally. Other kids, like Lara, suffer setback after setback, finally recover and live normally. Aria will recover in her own way, always unpredictable. Her wee body has been through two major trauma’s in a short time. Sometimes things don’t work as they should for a while and sometimes they just recover and start working and no one is really sure what happened. Bugs will appear and dissapear, she will be sick one minute and well the next. It is not easy and I am only going from my personal experiences that you cannot plan or predict anything and nothing goes to plan. But take what you can, have faith and believe in Aria – she can do it.
    PS Attitude was fantastic, felt like we were there with you experiencing it all and feeling it all, I am so glad you chose Attitude because they didn’t sensationalise or glamorise, they showed life as it is for you, the truth and very compassionate. Call me!

  21. Niki says:

    Watched the doco yesterday and cried my eyes out. You are amazing, strong people who deserve all the help you get from the Govt.Dont feel bad about any of that.
    I have had long and sad hospital stays with my daughter too, and I feel your pain and “numbness” at times.
    My prayers and love to you all.
    God Bless
    Niki

  22. Aliison says:

    I am awed by your journey, and only God could truly bring you through. I was touched by your story and the latest posting. All i can say is dont be discouraged, people are praying for you. Keep your eyes fixed on THE ONE that has your whole family in HIS HANDS. I thought about how hard it would have been to make such difficult decisions, and as a mother and parent, you do what you have to do. I encourage you to keep going. There is a testimony to share in this journey that you are on.
    May the Lord be with you all
    God Bless Alison

  23. Mary says:

    Have only just become aware of your story. You are a wonderful family, your little girl is incredible as are your strength and courage. My thoughts and prayers will be with you daily and may you continue to get all and any financial assistance you need to continue the battle. You are right Anita in thinking that nobody in NZ would begrudge you receiving whatever you need in your efforts to save this precious wee child. May God bless you and continue to be with you in this battle. (The Attitude programme was wonderful.)

  24. Deana says:

    I have just finished watching the 2nd part, cried my way through it and just want to let you know that you and your beautiful family are in our prayers every single day……you are amazing parents, big hugs to you all xx

  25. You must know - Aria MacDonald says:

    [...] This is the second post today.  In case you missed the first long rambling one click HERE. [...]

  26. Ann says:

    A second chance at a good life is definatly the right way to go keep up the good work and lets pray that Aria will come through this bump in her road to recovery.

  27. Butcher Family says:

    What an inspirational young girl you have!! Loved the show on Attitude. They are a wonderful team. As for the Special Treatment funding, we too have used this to fund surgery overseas for our son and it has transformed his life. Aria totally has the support of all NZ’ers here for sure.
    Love and prayers to your family

  28. Maurine says:

    Hi Hamish and Anita, I am a mum of a 19 month old and a 4 year old and I have just watched the show and even though I’ve been reading your posts for several months, seeing it in pictures helped me realised how tough every single thing must be for you over there. Seeing Aria so sick was heart wrenching as well. She is such a fighter! You guys are absolutely amazing; never doubt the support you have from Aotearoa. I’m not a religious person but i wish I could pray for her today.
    Lots of love and hugs from a mum of 2 from Auckland. Please let us know if you need anything else from here (NZ kiwiana food, books, toys???) Happy to send stuff to you.
    Hang in there.
    Maurine

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“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”- Jeremiah 29:11