2009 March - Aria MacDonald

Well, just when we were starting to get worn down and kind of sad about our family being so long apart, the Dr’s have told us that we are homeward bound in the morning. WOOHOO!!

Even better we don’t have to go home on antibiotics.!!

They’ve decided that things have settled down enough and Aria is showing enough signs of getting better and happier to send us home. They think that part of Aria’s appearance of not being happy is that she is just sick of hospital after quite a rough stay. On one hand I hope they are right and when she comes home she will be happy and get back on her feet. On the other hand it would be really sad if she has been brought so low by the hospital stay.

Anita and Aria should arrive home early tomorrow, and tomorrow night we will all sleep in our own beds for the first time in nearly two weeks.

Thanks to all those that have helped with our little man Asher, it is comforting to know that people who love him are looking after him but I, and especially Anita, miss him terribly when we are dashing in and out of hospital. Thanks to Nana and Poppa, Granddad and Sharon, Auntie Alex, the Jnr Levi’s, Keri-Anne, Ian and Tania, Rebecca and Helen and the Bracefields who have helped out with Asher this stay…. wow it does really take a villiage to raise a family! (Hope I haven’t missed anyone….)

It appears that Aria is a bit perkier today.  Great news although she is far from her normal self.  But she is talking and laughing more.  Today we brushed her hair and dressed her and we played puzzles in the playroom.

Tomorrow Hamish is back at work after over a week off.  You would think that after a week off he would be refreshed and holidayed.  Far from it.  Actually it is really sad that we have ‘wasted’ a week of what could of been a nice family holiday on such an awful week.   Although we are grateful that F & P Finance was willing to allow him to take it as annual leave because as you can imagine Hamish used his sick leave up long ago.

We are hoping to get home really soon and that Aria keeps improving. Time will tell.

Well a lot or not much can happen in 24 hours.

Not much- Aria is still the same which is not good. I am struck by her sadness, she seems really down and sore. She is barely speaking, her only words are Yup No and Mummy. She is mostly lying down and watching TV. I brought a puzzle in for her hoping she would do it but she wasn’t interested. It is hard to watch.

A lot- Matisse came super close to transplant. My heart sank into my toes when I read the full story. My mind can not wrap itself around the concept of how hard it must be for them and Matisse.

We are hoping for fresh insights tomorrow when handover happens and perhaps an action plan. We feel like progress has stalled becase of the sodium drama. The original reason we took Aria in still remains just as bad as when she was admitted- zero progress is hard.

It’s time to admit that things are still not right with Aria. We were hoping her flatness and lack of energy was her recovering from the PICU/sodium ordeal. But now she has had two good(ish) nights sleep and she is still the same. Plus her tummy is still big and uncomfortable.

We are pretty disappointed, on Monday morning things were looking better. She was much happier, her tummy was looking normal (61cm for those who like numbers like me). Today her tummy is back up to 66cm and big and sore looking.

It is terrible timing, Hamish’s parents are on holiday and my Dad and his wife are over to see us. Quality time family is difficult to get in a hospital environment.

Strangely I find myself pretty fine about the whole situation but then on the other hand I am completely gutted. I am only gutted because it means this situation isn’t over for Aria and I dread to think what is in store for her. She has been thru so much this week and there is still more to come including the idea opening her up. And Asher, finding care for him and it is so hard to leave him everytime though everyone loves to have him. But I miss him heaps.

But I not angry, grumpy, stressed and emotional like I used to be. My only angst is for my kids but that angst doesn’t lead to the list just mentioned. It is amazing what God can do.

Anyway – back to Aria. Her sodium today is 149! Yay, 140s is in the normal range. But watch this space, please pray she gets better.

The Wiggles visited Starship today. It was pretty cool to see them in person doing their thing. Aria wasn’t too fussed though and just wanted to walk around the hospital after being couped up in PICU for 3 days.

She isn’t quite herself today which is a shame. Really tired and not talking much. You have to work really hard for a smile which you will get if you make Green Dolly do crazy things. Rebecca discovered that trick.

Hamish text me as I was battling traffic. Aria fell asleep holding his hand and he was a happy Daddy. Aria isn’t much of a hand holder, to independant for that! We knew she was sick last week when she was lying on the floor and wanted Asher to hold her hand. Which he did for a bit until wanting to get up and run around.

Sam and Lara are also in today and admitted for a couple of days 🙁
Sam and I sat at Tiny Bites (cafe in Starship that sells very average food) and she was lovely enough to let me unload on her a bit and talk about our experience. Which is so kind considering her own girl was in surgery !! I got a bit teary on her (sorry Sam!) and I realised that the emotions are still bubbling away and need to be dealt with. Best get on to that!

Oh and Aria’s sodium is 154!! YAY!! 145ish and we can go home, pending the surgeons ok for the original reason we went it and that is the tummy issue.

Asher and I had a really good night and so did Hamish and Aria!

Aria slept all night which is great news! She has had very little sleep in the past 72 hours so she is catching up. Poor girl, one night she had 2 hours and the other night 1/2 an hour.

Her sodium is 161- Yay!!

There is a sense that it is over.

We are back on the ward with a new wiggle and reasonable sodium levels. They are around the 160 mark but still need to drop to the 140ish mark to go home. Aria is really tired from the GA and wanting to see so hopefully Daddy has a good night. But she is asking for walks so that is a good sign.

It was hard going back to the ward and returning to the scene of the tramatic event that took place on Tuesday. A bit of nerves going back for lots of reasons really. But is it great to be out of PICU, it is a huge relief.

Aria’s tummy is still a bit swollen and tender so we are really hoping that goes down. We are so keen to get home and forget what has happened and move on. There will be an investigation and a report written which will take 6 weeks or so. Keen to read that too and then close the chapter on the whole event!

As always there is more to say but will sign off for tonight.

Just thought I would drop in a quick update to say that  Aria’s sodium has got down to 164 now which is a vast improvement, the thirst has faded and been overtaken by an overwhelming tiredness.

She has also just been called into theatre to get her new ‘wiggle’ line. Thankfully she went into theatre naturally asleep and hopefully will wake up to a new wiggle and a better day.

We’ll be updating things further once she is out but for now, keep praying for a quick return to better health and a much desired homegoing for Miss Aria.

Aria’s site is being updated every 8 hours or so. You might of missed my midnight post, you can read if you want but perhaps it is the rantings of a emo mother.

Aria’s sodium dropped three points over night. We were hoping for 10.

She is really grumpy and unhappy. That is so hard because yesterday she was fine and happy-ish. She is sleeping better though so that is something

Looks like perhaps another night in PICU. But hopefully a new central line this arvo. I hope so really hope so.

The full enormity of the situation is starting to catch up with me. I can’t believe this happened. Aria is here because of a hospital mistake, this shouldn’t of happened. It was preventable. Not angry more disappointed and hurt.

It finally happened, it all came to a head and there were tears, Aria’s and mine. What a dark moment or moments rather.

Hamish left for the night. It had been a difficult day and they had made very little progress on bringing Aria’s sodium down. It started the day at 173 and ended at 171. The previous night it had dropped 10 points.

And then they decided we weren’t allowed to give Aria anymore drink. Of course she was then begging me and crying for water ‘please mummy please water please’ and it was truly awful. How do you say no to your little girl when she is begging you for the vital ingredient of human life 😥

The Docs were in the room on rounds and could see what was going on but decided to still tell me I couldn’t give her water. So of course I burst into tears and demanded to know why I couldn’t give her water and how the heck they expected me to cope with Aria and how miserable she is. This was in a room with 4 other PICU kids and their parents who probably thought I was nuts. Obviously the docs wanted to wrap up the public show and pretty much said ‘yes it sucks but it is best for Aria’

Anyway the charge nurse came back later and said that the consultant wanted to talk with me again and of course I said No way, not interested!!! I finally got Aria back to sleep and distracted from the water (all liquid hidden by now) and walked out the room to find a quiet place to have a cry and alone time. The consultant approached me and said ‘please lets talk’. So I said yes but I don’t really want to (so teenager of me I know!) So she talked and just repeated she was understanding etc etc and how the situation was so terrible because the hospital caused it and how we must not be trusting and how hard it is to be in PICU (it is a horrible place) and of course was a awful horrible yucky time Aria is having and how hard that it. ANYWAY, it was a helpful conversation and I felt better for it and I shouldn’t of been so pig headed.

When I got back to the room Aria was awake but better and there wasn’t a word about water or drink the rest of the evening. Amazing considering she was begging everyone who came in the room for water and had drunk over 8 litres of saline during the day.

As Aria and I had sat crying, her for water, me for her, I just begged God for relief. It came in the form of a more talking with the people who I didn’t want to talk to, how strange! And Aria’s thirst for water being no more which I never believed could happen at that moment.

It was a hideous night and I am glad it is over but lessons learnt all around.