2009 July - Aria MacDonald

When your not well enough to be jabbed.

That’s right Aria and Asher were supposed to go and get some vaccinations they need for if/when we head to transplant, but it was decided that they were both to sick to have them.

It’s a little frustrating as it worked out perfectly to have them today as I was off work, however God had other plans.

At the moment Aria and Asher both have what appears to be a cold, with coughs and little grumbling temperatures. Add this to Aria’s low blood count, shonky liver number and she isn’t at her best. I guess best with Aria is a bit of a sliding scale, as time moves on she is struggling more with her health so todays best, may not be what it used to be.

Please pray for Aria, that she gets better (Asher too) and that she gets the transplant she really needs, sooner not later.

The last week has been pretty difficult and it looks like this week will be the same.

Aria had her first day back at Preschool today.  I stayed with her for the morning.  She was overwhelmed and sensitive and it was all a bit stressful.  Little things set her off and it was difficult to keep her on task and settled.  We met her Education Support Worker (ESW) today who was an answer to prayer because her name was mentioned to me months ago by Preschools head teacher as being a good ESW.  She interacted well with Aria and didn’t seemed to phased by Aria’s drama.

Aria’s iron is really low at the moment (HB 62 for those in the know).  I wonder if this explains the behaviour.  After I had Aria I was 71 and nearly passed out in the hospital toilet and had to have a blood transfusion.  But I remember feeling completely rubbish. 

One of the hardest things about parenting Aria is having understand and manage her behaviour in light of her health.  We have never wanted to let her condition be an excuse for bad behaviour.  But then there must be a sliding scale as to when you are simply being to harsh in expecting her to behave as she would if she was in perfect health.  And how do you know the difference?  Someone needs to write a book on parenting chronically ill and hospitalised children.

Asher’s poo situation seems to have calmed but not fully sorted.  And today he has a runny nose, cough and temperature.  I am currently hating winter and we are about to have two winters in a row!

So feeling a bit discouraged today and feeling pretty bad for Aria.  Although when Hamish asked her about Preschool today when he got home she was pretty happy about telling him how fun it was.  Guess that is a good sign!

Aria is almost back to full strength with is great.   We decided not to send her to Preschool yesterday which was disappointing but Preschool is lots of fun and takes heaps of energy.  We didn’t want to tax Aria too much.  But next Monday we will be there!

On Saturday night our churches held a Wedding Dresses Thru the Ages night.  Basically wedding dresses were acquired from young and old and they were modelled by the teenage girls in our church.  It was a very interesting night seeing the fashion changes throught out the century.  Also they asked people to bring donations to Aria’s Appeal and a very nice $285 was raised.  Hamish and I also got the top layer of the wedding cake to take home, made by Mrs Warner who made our wedding cake.  I also did a little talk about Aria story.  I realised when I got home that I have gotten a bit rusty cause there was lots of stuff I forgot to say! 

Asher still has the runs.  It.is.doing.my.head.in!!!!  We switched him to soy over the weekend and we had no poos for 48 hours.  YAY!  But then yesterday 2 huges ones everywhere!!  It will be 3 weeks at the end of the week!!!  If you could pray for him I would appreciate it.

Aria- still under the weather and spiking temps.  However the temps are in the 37s so that is ok.  She is still pretty flat and not up to much.  However she is making progress each day.  Today she took a few steps and is sitting up and playing puzzle with Daddy and Ashie.

Asher- has had the runs for 2 weeks now.  The piles of washing and gross nappies are starting to do our heads in.  Thankfully he is fine in himself and eating and drinking great.  The Doc reckons it will just take some time to pass thru 🙁

Hamish- finally well enough to return to work.  I am really surprised about how much this Swine Flu knocked him.  Although he wasn’t comfirmed as having it I guess it is fairly safe to assume he had it.

Me- very thankfully that I only had a mild cold and a mild dose of Asher’s runs yesterday, although it didn’t feel mild at the time it only lasted 24 hours which is better than 2 weeks!!!

Really looking forward to everyone being healthy again

Today marked the closure of the Sodium Drama.  The Starship had finished their investigation and had completed the report about the events that cause Aria’s sodium overdose.  We had a meeting today to read the report and their findings.  Thankfully the meeting couldn’t of gone any better and apart from one sticking point we are happy with their findings and policy changes.

There was an apology in writing and in person by the people at the meeting and we felt happy about that.  Of course it was hard and I did get a bit emotional at one point.   We are just so disappointed that this happened because Aria’s care at Starship has been really good and we are so thankful to everyone there.  It still hurts to remember how much Aria suffered and how horrible the event was for our family but we can now move on and forgive and forget.

This verse sums up how we have come to peace on the sodium drama and Aria’s illness in general

What time are good, be happy.  But when times are bad, consider this: God has made one as well as the other. Ecclesiastes 7:14

Why this have to happen to us?  Why was Aria born they way she is?  Why is her life so tough at times? What does her future hold?

Who knows?  Well God does and God had made things they way they are.  That is a huge source of comfort to us.  There were no mistakes or errors, everything is as He intended them to be.  And we will still praise Him because He is worthy.

Please keep praying for Aria and Hamish, they are still both under the weather.

We are all home together but under quarentine for the next couple of days 🙁

Hamish and I are still going to our sodium meeting tomorrow but wearing masks and lots of handwashing.  According to the gastro consultant, Dr Simon, Swine flu is in the community now and it has move from trying to contain it to just managing people who get it.

Unfortunately Asher now has a temperature so we are guessing he has to it now plus he still has the runs from last week, poor little dude.  Aria is on the improve and thankfully she got thru the worst of it pretty well.

Thank you for your support.  We really can’t figure out how Aria got Swine Flu of all things but hey! nothing surprises us on this journey.

… it’s Swine Flu.

Tonight Anita was given the results of the virus swab, and the result says that Aria has swine flu.

That will explain why the anitbiotics weren’t having much effect.

Anita in her thoroughness was asking our Dr E the other day about swine flu. About how Aria would be treated if she caught it and if it was more dangerous to Aria because of her condition. Seems like those question were very relevant to this circumstances. Dr E suggested catching it now wouldn’t be the end of the world, better now than post transplant as in most of these illnesses.

We’re a bit shocked to hear the news, we have no idea where she caught it from or if the rest of us have it, or what this means for us in terms of quarintine etc…..

We are hoping that now we know its a virus and the worst of the fevers seem to have passed that we can bring her home again, maybe even tomorrow if we can twist the Dr’s arm a bit.

Please pray for our family, this admission has been a rough one.

Also pray we can still have our Sodium meeting on Monday, we don’t really want to have to put that off again either.

Aria is on the improve I think.  Rebecca went in last night and brought Hamish a roast dinner.  Thank Rebecca, it was the most Hamish had eaten in about a week.  Aria and Rebecca had lots of fun playing with paper darts and Aria didn’t go to sleep till late which is standard hospital behaviour when in hospital.

Her highest temp over night was in the 38s and that was without IV panadol.  Previous to that it was in the 39s/40s.  Her cough is worse but she is up and asking for walks which is better because she was just lying down yesterday.

Hopefully we will be home soon although it is hard to say when.  We have a meeting on Monday about the Sodium Drama so it would be nice to go home after that, but we will see.

Aria is much the same today.  The theory on ward rounds today was that she has a virus, most likely the same on the hit Hamish this week.  Hamish was pretty sick this week and knowing Ham like I do he isn’t one suffer from ‘Man Flu’.   But this week he was in bed sleeping and resting most of the week.  So if Aria has the same thing then it is pretty nasty and hopefully this explains the temp.

Aria has two nasal suctions this week to find some boogers to test.  This is really awful and she was quite upset about having this tube suck down her nose to the back of the throat.  Yuck.  There was talk of doing it to Hamish but he escaped that when they decided to do a nasal swab.  Ok, I was wondering how they were going to managed this, to stick a cotton bud up her nose without her yelling.  But do you know how Hamish managed to sell it to her?  But telling her that it was ‘just like nose picking except Mummy can’t tell you off cause you can tell her Dr E said you have too’  Apparently she was an angel and told them which nostril to do first.   Kinda funny and kinda gross.

Anyway please pray that Aria’s temp breaks soon and we can get home.  And for Hamish too cause he still isn’t well but still has to keep going.

Not much change to report in Aria.  She is still hot and has spent most of the day lying down in bed.  Her colour is good though and she is talking and happy so that is a great sign.  But still it would be nice for that fever to break and soon.

We are all struggling a bit at the moment.  At about 1.30 I started to feel very ill so Hamish and I had to swap shifts.  I was hoping he might have another night at home to fully recover because he still isn’t 100%.  But I got a wicked headache and felt nauseous.  Thankfully Asher is a good boy and entertained himself while I lay on the couch.  Feeling a bit better now but looking forward to a good nights sleep.

This morning while Aria was watching her cartoons I got to go down to the family rooms and spend some time with Sam’s mum Shirley.  We talked and encouraged one another and spent some time praying for our kids and families.  Our admission seems easy and straightforward compared to Sam’s battle at the moment. 

I would doubt an hour would pass when I don’t think and pray for Sam.  We are currently on ward 24B which was the ward we spent the first 8 weeks of Aria’s life.  I just can’t help but be hopeful because we were told Aria would die and her condition was fatal but God rescued her and brought us hope.  Perhaps He might see fit to grant Sam that same hope and time with his earthly family.  But if Sam should be called home into the strong safe arms of Jesus we will still praise Him because that is a miracle too.