A bad morning
Today is a bleeding day for Aria. Today is my day on with her but Hamish was going to do a few hours so I could get to church with Asher. So I was up early and over to see her.
Aria is a complete legend, honestly just sits there and says ‘oh no bleeding’ and she vomits blood and as it pours out of her nose. Not much drama, just deals with it.
The pressure of the blood and clots was so great that her g tube completely popped out and there was blood everywhere. It got into the threads of her line too which is really concerning. I hope she doesn’t get a line infection because then she will have to come off this list until it clears.
Hamish turned up at the end of the drama with Asher who had just woken up. This was around 9.20 and I realised there was no way I could change and feed him and myself and get out the door for 10am for church. So I just sat on the floor and cried while Asher sat beautifully and Hamish cleaned up Aria.
We wonder how long she can go on like this for. We could ask the doctors but probably don’t want to hear the answer. But at some point we must because if organs don’t come we can’t do this alone.
So I guess today will be another transfusion, she seems to have them every 2 days. That will buy her another week at Status One.
God knows what she needs and He is good. It will be His decision as to whether she get to extend her earthly life or not. We take comfort in that. But it is hugely difficult, particulary the fact it is just me and Hamish. We don’t have the luxury of sick days or even time to think or talk or plan. My mind boogles at how on earth we are going to manage.
26 Responses to “A bad morning”
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- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 28 Dec at 6:10 am
Hear and feel your pain and trust that you will be comforted in God through this time. Continuing to uplift you all and the staff you are working with. God bless.
With love
McLays
# 28 Dec at 6:31 am
Thinking of you always – you are in our thoughts and prayers.
# 28 Dec at 6:37 am
We truly feel for you guys. We could never start to imagine how difficult it is for you but we continue to pray for Aria and for all of you. Your faith and the love you have is just so inspirational.
Our love as always.
xoxo
# 28 Dec at 7:19 am
Oh sweet sweet girl. Bless her, praying for those organs.
# 28 Dec at 7:29 am
My heart goes out to you. Every day I think is this today that Aria will get her transplant. I can only but imagine how hard it is for all of you. Sending you lots of love. xxx
# 28 Dec at 7:38 am
Sometimes God gives us bad days so that we appreciate the better days so much more.
I along with many New Zealander’s have gained huge inspiration from the life that you and Hamish have led and the experiences that you have shared with us.
I love reading the sweet stories about Aria, and smile at the funny things that Asher does. Even though I do not actually know your family, reading these blogs has allowed me to have a greater understanding of not only what you as a family are going through, but also the incredible strength, faith and determination you all have.
I pray for a miracle with Aria, and that she may be a witness of God’s love and power!
Lots of love and blessings,
Loren x
# 28 Dec at 7:42 am
You guys are in my prayers. Love you heaps, Lou xox
# 28 Dec at 8:03 am
oh poor sweet Aria Im praying for her
and You and Hamish too
I pray that He will hold you all closely to Him
Healing loving and protecting you all
# 28 Dec at 8:17 am
Shedding tears for you here 🙁
I’m joining with everyone else in praying for a miracle that will just amaze you all. And may it be very soon.
May God give you His strength and perseverence again today.
# 28 Dec at 8:55 am
Oh Heck! I truly feel your pain and it is so difficult for you. Lara didn’t vomit blood but was on transfusions every day or every couple of days up to transplant. It is amazing how stoic our kids are when we are falling apart isn’t it. Aria, thankfully, will be feeling too drained and poorly to feel too much pain and distress, and yes this is something to be very grateful for – a little bodies way of coping and not stressing itself.
It is very overwhelming for you both at this stage and if I can suggest that you need to break it right down. Work your way through small time periods, take each hour, or each 15 mins if that is too hard, and say “I can get through this hour”. Don’t look or think too far ahead, not even to tomorrow. This is not something that you or anyone can control and it is very hard to let go. Try and switch your head off and live in this moment with Aria. she is holding it together and you can too.
Remember – miracles happen every day – you have seen this too, many times over. Hang in there, breathe and take it minute by minute. Always thinking of you.
# 28 Dec at 8:57 am
Bless you bless you bless you.
# 28 Dec at 8:57 am
Hi Anita and Hamish, Aria and Asher
My loving thoughts are with you all. There is nothing I can say to help you guys, but just know that I am thinking of you all and I admire you all so much. I pray that God will continue to give you strength and help you through. Aria – you are an inspiration to all. You are an amazing little girl and I pray everyday that you will be given a chance at living a long and healthy life. Asher – enjoy your cheeseburgers while you can. Anita and Hamish – much love to you both xxxx
# 28 Dec at 9:14 am
Thinking of you all and praying. Hang in there Anita and Hamish, we all wish we could be there with you to support you. You guys are awesome and such wonderful parents to Aria and Asher. Love to you all. From the McColl family.
# 28 Dec at 9:29 am
Praying for you guys!
# 28 Dec at 9:36 am
Dear Anita & Hamish,
I am a TNNer & have followed Aria’s journey since almost the beginning. I can’t believe this is the first time I’ve sat down to comment however today seemed like a day to reach out to you & offer more prayers & blessings for Aria & your family. With love & prayers, from the Jansen family xxx
# 28 Dec at 10:31 am
Anita, sending strength and love to you, Hamish, Asher and Aria xxx
# 28 Dec at 10:41 am
Sending lots of love and virtual hugs – our family too will keep you guys and Aria in our prayers. It is so hard not being able to help in some tangible way, and I know that’s just a glimpse of your reality.
# 28 Dec at 10:55 am
Hi Hamish, Anita, Aria and Asher.
Although none of us can be with you in person, it is great to “hear” of your daily lives and stresses and to be able to uphold you in prayer and send best wishes. Although physically on your own, there are many with you all the way in this way that we can. Great to that you can skype with family.
Love to all. Bill, Delwyn & families 🙂
# 28 Dec at 11:17 am
I sorry to hear that this was a bad day for all of you! You are always in my prayers!
# 28 Dec at 11:31 am
Oh No!!! I’m so sorry for all the drama down the hall this morning. I always peek in your room & hope no Aria means maybe, just maybe you got “the call”. Of course up until now you’ve just been out walking the halls. I’m praying Aria’s perfect gift comes very soon. You are in the best hands here, trust in that. If you ever want to step out to chat or grab a coffee, please please let me know. Thinking about you all…
Erika & Emerson
# 28 Dec at 11:35 am
Still praying for you all.
# 28 Dec at 12:16 pm
Church can wait another week with the focus needing to be on Aria and Asher, with help from Hamish. In situations like this, just say to yourself, “to hang with this, I don’t need to go to church” and call on the one-on-one nursing staff to lend a hand with Aria. Don’t get stressed out with things which are not important, and which you can’t control, and which can wait another week. Easy for me to say, I know, but treat external things to the hospital as un-important at this point! Just a nice bit of news and a perky-up. Young Hirschsprung’s survivor, Elliot Evans just celebrated his 14th birthday. It can happen!
# 28 Dec at 12:22 pm
Loving you guys and standing with you
# 28 Dec at 12:25 pm
Anita, Hamish, Asher and Aria
I’m thinking of you guys today and pray that things turn the corner.
Much love to you all
Natalie, McKenzie and Sarah xx
# 28 Dec at 5:43 pm
Still upholding you in prayer. Thinking of you most of the day.
# 31 Jan at 12:37 pm
Are we doing ok? - Aria MacDonald says:[…] found myself surprised as how well we handle the blood.  I was remembering this day and glad things are better now.  Not that we are happy about Aria’s bleeding, perhaps we are […]