2010 January - Aria MacDonald

Today I heard a word I haven’t heard in a long time in reference to Aria. The word was- DISCHARGE!

I can’t believe it and feel a bit panicked about it. Can you believe it? Aria will be able to leave the hospital and come stay at our room in the Lied (which doesn’t thrill me actually all four of us in one room!)

Aria is doing so very well. She isn’t on morphine anymore and doesn’t seem to be having any pain. Her blood pressure has come down and she hasn’t had a bleed in a long time, almost a week. A week is a long time in our world. The team feels they have been able to stop the bleeding with a medication called Ox something.

Aria’s status one runs out on Saturday midnight. And her HB is staying stable because of the lack of bleeds which means if she doesn’t get a transfusion she drops down the list. She will still be very high and may actually not drop at all depending on who else is on the list.

Overall I would have to say that this little episode over New years may have actually helped. Or rather the treatment helped, moving some of the junk that was in her belly that was giving her grief. They were and are still flushing lactulose up and junk is coming back down. I leave the details out but put it this way Aria is not a fan but she does ok with it.

So Aria has been in PICU and listed for 4 weeks on Friday. Wow. Again everyone is surprised there hasn’t been organs available and our wait is considered ‘long’ as I was told this morning. But for whatever the reason is God didn’t choose 2009 to be the year of the transplant. 2010 will be, just not sure when of course.

Honestly, 4 days ago she was on a ventilator and barely conscious and now the team is talking discharging her! You wouldn’t read about it, except you are, right here. God is good that’s is all I can say.

UPDATE
They have stopped the Ox something med. Another YAY. This means Aria is completely pump free for 4 hours a day. She has been doing well with her walking, standing independently by herself for a good half min or so. It will be much easier to get her to walk when we don’t have to manage her and a pump and pole. And another step towards discharge

We are back to the business of daily life.  All those boring jobs that are important but get put on hold when things were dicey with Aria are still needing to be done.  Bank accounts and drivers licenses to name a few.

We are finding opening bank accounts a slow process.  We have to wait 30 days for eftpos cards and get a letter in the mail to activate the internet banking and wait 60 days for a visa debit card.  I guess we are just used to instant banking and not waiting for this and that.

Hamish is going back in time and sitting his practical driving test on Wednesday.  He is able to get a Nebraska State driving license once he passes all the tests so it is back to the road code for him!

Aria is totally back in business and is doing really well.  We have started afresh with getting her to walk everyday.  The consultant told it us was the most important thing we could do as parents in regard to her transplant recovery.  So since we aren’t doing any any other medical cares we should really try and do the best we can.  It is really hard because she doesn’t like it and it is stressful for us but it is the best thing for her.

We still can’t really believe how far she has come and how sick she was!  God is so good.  Still praying for organs though!

It is a beautiful sunny day outside, it makes you want to go outside till you realise that it is 0 degrees outisde….. farenheit. That is -17 celsius.

So me and Aria are camped out in her room, while Anita and Asher go to church with our friends Carol, Cordell and the rest of the visiting families.

Aria no longer has her breathing tube, no high flow oxygen probes, not even low flow oxygen probes just plain old breathing. She is having a good day too, despite the fact she stayed awake till 3.30am this morning. I guess that is what happens after you sleep for 2.5 days. So far we have read books, watched DVDs, had a wash, eaten some lunch (if licking up tomato sauce counts as lunch) and helped the nurse scan her meds.

She’s been very patient, I’m sure she is super duper keen to get out in her pram for walks but she is showing great restraint in not asking for a walk every 17 seconds. We are waiting to make sure her oxygen levels stay good before we get the ok to go off the ward, I suspect by tomorrow we will be taking the family on grand tours of the hospital with Aria as the tour guide.

Anyway, thanks for stopping by, we do appreciate it. I think we are back to non-dramatic updates, you’ll have to get your daily dose of soap opera somewhere else today.

These were the first words out of Aria’s mouth as soon as she had her breathing tube removed at about 3pm today, WOW!

Aria has made an incredible recovery. Anita and I can’t believe just how well Aria is this afternoon and evening after only two days ago she was totally out of it and looking in bad shape.

Tonight she is doing stickers, talking and joking with us, asking for walks again and generally being as happy an Aria as we’ve seen since we’ve been here.

I have to marvel at what a great nature Aria has, she must have been pretty awake and aware most of the day, but unable to sit up and communicate because of the very annoying tube in her mouth and had to put up with a lot of procedures during the day, but she never once got upset, angry or attempt to yank out her tube. What a great kid we have been blessed with.

This incident has to go down in my mind as the third time things have looked really dire for Aria but God has brought Aria back to us. She truly is in God’s hand and her life is his and his alone. We just really appreciate him letting us continue to be the parents of such a special child.

This whole incident brings to mind the words of one of my favourite songs, one that really speaks about the journey we are on, based on this verse from the story of Job…. “The LORD gave, and the LORD has taken away; Blessed be the name of the LORD.” Job 1:20

Part of this song goes,

Blessed be Your name
When the sun’s shining down on me
When the world’s all as it should be
Blessed be Your name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

No matter what happens with Aria, I am confident our faith will persevere and grow and it is the prayer of my heart that in every situation we will choose to say Blessed be the name of the Lord, for today at least I can assure you that we are.

Great news this morning, Aria is awake and alert and trying to interact with us!!

She’s even had a couple of goes at trying to extract the breathing tube herself. This however is not a decision that can be made by Aria, so we will be waiting for this afternoon to get the Dr’s okay to have this done. They are happy with Aria’s mental condition but they just want to be extra sure that her breathing will be okay by herself. To this end they are treating Aria with asthma medication, a vibrating treatment and suction every couple of hours.

We are so excited and grateful to God to see Aria back with us, it was a very scary experience to think that Aria was ‘gone’. However God has again delivered Aria back to us through a tough and terrible situation.

God is so gracious to us, it is such a blessing seeing our (and your) prayers answered, and answered in the ways we desire.

Now, about those organs God…….

UPDATE THEY ARE HERE!!!! Yes! We feel instantly better knowing we have three helpers. Although it feels surreal but we are so happy. Also Aria has been doing really well today, making eye contact and moving around and looking at the TV. All good signs and we are hoping that nasty (but helpful) breathing tube can go tomorrow. Or better yet it can stay and she will get organs tonight.

Asher has gone to spend the day and maybe the night with the Arms family and Hamish and I are super grateful. Asher is such a joy and we are so pleased he is part of our family. He is the bright spot in the darkness. Of course he is a two year old boy and full of energy and loudness. Hamish and I can’t really manage so well with that combination so we are pleased for him he is having fun.

Hamish has headed out for the morning for some R&R and Aria and I went down for a CT scan. Actually it was Aria, two nurses and a doctor and me doing what I could. The medical staff were chatting about Christmas and what they got there children. The senior nurse rattled off an impressive list of gifts that she had gotten her only daughter. But she said it was totally worth it to spoil her daughter at Christmas and she was a good girl.

My dear friend Shirley shared this verse with me and today’s conversation brought it all back.

Matthew 7:11 (New International Version)

11If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!

There are many many people praying hard and petitioning God for Aria’s gift of life. Some are seasoned prayers and for some, praying is new. BUT God hears. And He loves to gives us gifts just as human parents love to support and love their children with gifts of support, words, finance, affection and just ‘stuff’ that kids enjoy.

Aria is doing ok. They are going to reduce her sedation and hope she wakes up so they can remove the breathing tube. Not that she is needing it. She is managing around 30 breaths per min and the machine is set to 16. So if Aria’s breathing was to drop to 10 the machine would pick up the slack. Her blood work is still looking good.

We have an amazing sense of peace. Still lots of tears and struggle but right now I am not shaken but steady in the knowledge that I believe organs will come.

We were pondering the gift of people today. I can’t believe I have people that will walk into Aria’s room and hug me and I can feel free to cry on their shoulder as they hug me tight. People who will provided accommodation, transport, love and support to the family when they come. People who will say ‘you can be honest with us tell us how you are feeling’ People who will pray with us and open the Word with us! These people were strangers a month ago but have opened their heart to us. You know who you are- thank you.

See God is giving us gifts and bringing us thru- please may He see fit to give Aria the biggest gift.

Well I am up at 3am. Woken by a random horoscope text to Hamish’s phone. The one annoying thing about waiting for ‘the call’ is that it has to be on day and night so your precious sleep could be interrupted.

I am struggling so much, torn between what I should focus on. And how this story will end? There is still time for a miracle but it may not be in God’s plan. Can I accept that? I will of course but how massively hard to have come so far and yet have Aria’s life taken at the very last hurdle. That seems strange and wrong and the exact same struggle we were having regarding funding. But I know God is never strange and wrong but my human head can’t get it around it.

The cavalry is coming- the family is on the way and I am so hugely relieved. It will be such a joy to have them here and to know Asher is taken care off. We are in a strange situation of letting the medical team balance all the factors. I don’t think it is a ‘call the priest’ kind of moment but we do need support that can only come from those who have done time with us. Hamish and I will be able to fully relax knowing Asher is with family and focus on Aria. Awesome.

Again- please I am not looking to anyone to help answer my impossible question. We do appreciate the comments so keep them coming. It does feel like the earth will fall into the sea should we face a life without our girl.

God- this blog is you to. Please let us keep Aria, please send organs. We love you, show us the way. Going to see Aria now, we will talk more then.

Updating from Aria’s room where we have just had the next step in Aria’s continued struggle.

The Critical Care team has just intubated Aria.

This process is where they place a tube down her throat to enable a machine to breath with (or in the worst case scenario, for) Aria. This is due to the toxins in her brain effecting the normal processes which regulates things like being awake and breathing.

We weren’t expecting things to progress quite this quickly, so we are obviously concerned as to where this is leading.

The good news is that we have family from home, flying over to give us some support.

There are a lot of things going on at the moment, a lot of things could happen in the next days, hours or minutes, we are trusting that God knows and has prepared Aria and us for those things since before time.

We are hopeful that organs will come, she will recover fully and show no ill effects of these toxins in her brain.

Yet we do not know this will be the case, but we do know “that in all things God works for the good of those who love him, who have been called according to his purpose”.

Please pray for Aria, for us, for a donor, for our family travelling, for the medical teams…. just throw as much prayer as you can spare our way, it would be appreciated.

No change in Aria overnight. This morning is she very sleepy. She wakes to yell and says a few words that don’t make sense. I seem to be able to settle her by repeated her words back to her and she drifts off again.

Things are not looking good.

The team has been in this morning. They want to intubate her in the next 48 hours if she doesn’t improve. This is so she doesn’t stop breathing and get into a ‘crash’ situation. They are going to try some things to get some junk out of her gut and get those toxins moving. Rectal washouts which she is going to hate but that would be a good thing if she fought us because her current sleepy state is very concerning. In other ways her blood work continues to be stable and not showing up anything hugely concerning except for her high ammonia level.

They are exploring other causes of her sudden crash like line infection etc. Her heart rate and blood pressure are up too. But for us her liver disease has always come on suddenly so we are not surprised at the quickness of this. In some ways it is a blessing.

We are heading into another holiday weekend here in the US. Today is the 31st of December. Aria is still listed and status one. And will be listed until the last possible moment. The team still have “150% hope” that transplant will happen for Aria. So are we. They are very aggressive here (in a good way) and will do everything possible for Aria and push boundaries. And they are very familiar with Aria’s condition which is a blessing and comfort.

We are heading into The Valley. This morning I felt the need to remind myself of Psalm 23. In someways it has become a cliche but it was packed full of meaning to me this morning.

Psalm 23:4 (New International Version)

4 Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

We are at peace with whatever God decides for Aria. Speaking as her mother I just want her suffering to end, that is my consuming focus. Her being safe in the arms of our saviour Jesus is a wonderful and painful thought.

Please God bring organs and hope for Aria. We will continue to have hope for transplant until there is a clear new path for our girl.