2009 August - Aria MacDonald

Aria and I are home!  Don’t think we have ever been discharged from ED.

Of course Aria isn’t 100%, still has a little temp and big tummy.  But her breathing has settled and is normal.  Tummy xrays showed there was air in loops of her bowel which we already knew.

They came in at 9pm to tell me there were no beds in the entire hospital and I would be sleeping in a lazyboy in ED.  Of course I was not at all happy about that and asked to speak to the Doc again.  I needed to have a ready solid reason to keep me and Aria in ED for a bad nights sleep.  The Doc came in and said ‘go home’ but come back if anything changes.  Phew.

It is like walking on eggshells!  Seriously, I just wish that this Swine Flu or it’s leftovers would fly far far away.  God is certainly putting us thru our paces.

DARN!

Aria has gone a bit downhill today.  The temp is back and her breathing is funny.  She is pretty ok in herself but not walking and her belly is really big and sore.

So know back to ED for hours and hours cause there is no bed on our ward.  Last visit to ED was 12 hours before we got a bed!!!  AND Hamish is working on Saturday and we have a presentation to do at our Manurewa church on Sunday morning AND we are planning to go to Apollo 13 tomorrow night.  More juggling which I hate because it is stressful trying to link in all the moving targets.

This Swine Flu is nasty business.  Sucks I just want Aria to be happy and well.

Miss Aria is home!  Not in anyway 100% but we will keep a close eye on her and do her ABX at home so there is no point for her to be in hospital.

We are all nervous about what Swine Flu has done in Aria’s body.  I had a wee panic yesterday because I thought perhaps this was Aria starting to struggle.  Some long conversations later I learnt that it is documented that regular healthy people drop their iron levels and get chest infections post swine flu so we shouldn’t be surprised Aria did too.

It is hard because most of the time we have spent in hospital this year could of be avoided if I play the ‘what if’ game.  Also could of done without the drama yesterday with the concern over her iron levels.  But I realise Aria is doing pretty well and this is just part of the journey we are on. 

So now we are hoping her breathing improves and we don’t have to go back in on Friday!

Thanks for your support.  Every text/comment/email/facebook/offer of help/dinner means a HUGE amount, thank you.

Update Aria has been laughing and walking around this afternoon!  We are so happy about that :)  Her belly is really big though and it looks really uncomfortable.  Lots of gas in there according to the Doc and of course she can’t ‘pass wind’ so it is hard to get it out. 

Cute moment- When Asher got home she said “Ashie so happy Aria home”  Very cute, Asher was happy though, not just his big sister putting words in his mouth.

Yummy moment- the still warm double chocolate chip cake our friend Karla dropped around!  Thanks Karla.

Turns out the blood test this morning was wrong, the transfusion actually did help and her HB is up to 81 which is still well below normal, but is not entirely unsual for Aria. It is less than they expected it to be post top-up  but its better than having no change.

Even with the improved test they have kept Aria in because of concerns over her laboured breathing.

Also on the blood front they have some concerns over her albumin levels which are getting pretty low. The albumin keeps the fluids in the veins and stops it leaking out into the rest of the body. Aria’s tummy is bigger than normal so we wonder if there might be some leakage there…. who knows.

Anyway they are going to look at doing a albumin top up tomorrow, though it does add more strain on the kidneys that we are trying to avoid because of the kidney issues. Yes its complex and a little unclear what is going on.

We’ve also got a virus swab pending which may shed some light on things……

Anyway, long frustrating day, hopefully tomorrow is a little clearer.

Pray for Anita as she does the night shift tonight that she gets some good rest. I’m aiming to work tomorrow if things go smoothly overnight…. Anita is such a trooper!

Thanks for the prayers and keep it up please.

Aria was supposed to be coming home today.

It is not to be

They checked her iron level this morning to double check the blood transfusion had done it’s thing.  Turns out it hadn’t and her HB was only 63, only up 9 points and still really low.

The new theory is is that she has a virus that is breaking down the iron in her blood.  I am trying really hard not to google to find out what kinda virus could do that.  Doesn’t sound like a good one that’s for sure.  There are something you would rather hear once the Docs have put their spin on it and this is one of them.

They have just done a finger prick now to re-test her iron/HB.  Our hope is that the first sample was diluted because it was taken off her line and that happens sometimes.

We are so disappointed and nervous for her.  Both Hamish and I are really tired from sleeping badly with sick kids and hospital nights. 

Really hoping there is nothing serious going on with our girl 🙁

Aria is currently having a top up of blood which is great.  Hopefully she will be looking and feeling a bit better by tomorrow.

She is on antibiotics as it is likely she could have a chest infection post Swine flu.  But hopefully we will be able to do those at home and get home tomorrow.  YAY. 

So a very average way to spend a weekend but at least it was not during the week and we had to juggle work and Asher’s care.

Hamish was a lucky duck and got to see Samuel or ‘wiggle juice baby’ as Aria calls him.  I asked her if he was cute like Ashie and she said Yup!  We are so excited to see Sam doing so well, it is a complete miracle.

UPDATE Hamish rang to say Aria has perked up heaps since having the transfusion and is much more active and happy.  Asher is home from a big day out with Nana and Poppa and having fun at church with his cousins and Aunty and Uncle.  I am looking forward to a nice sleep and have a full tummy thanks for some dinners from Poppa and Debs.  We are spoilt 🙂

Aria has post kind of post Swine Flu illness.  According to the Infectious Diseases team you are more likely to catch something after having the Swine and the timing of Aria’s 2nd illness would confirm that.

They are starting ABX tonight and her and Hamish are staying the night.  Good news is that she is having a blood transfusion tomorrow, we are pretty happy about that. 

Asher and and I are hanging out at home and recovering.  Yay for Joanne who dropped off a yummy tea for us!  Thanks Jo!

Please keep her in your prayers and pray Hamish doesn’t catch it either.

Massive bummer 🙁

Aria chest is not clear as we had hoped and the GP reckons because Aria’s iron is low at the moment her oxygen levels might be compromised too.  Low iron means oxygen isn’t getting around the body well anyway but if you add in trouble breathing as well it isn’t a good recipe. Update Aria’s O2 stats are 100%, that’s good news.

So disappointed for her.  For regular kids this wouldn’t be too major.  But because Aria can’t have oral antibiotics (her gut can’t absorb them) she needs to go to hospital.  And if there is bugs in her chest they might start having a party and their chosen hang out place would be her central line.  Yikes! That’s the last place we want bugs considering it is 9 months since her last line infection and we plan to make it a year.

Sometimes this is so hard and I just wish we were a normal family who didn’t have this stress all the time.  I wish I didn’t have to watch my daughter struggle all the time with poor health.  I am so proud of her cause she copes well but I wish it was different for her.

I am also not well with a temp and bad cough and was hoping to rest today and have Ham manage the kids.  Well that’s not going to happen with Ham with Aria at Starship and Asher here with me.

I realise this blog is turning to the MacDonalds Moanings which I imagine makes for boring reading.  Sorry about that!  I hope there is some positive stuff to read soon.

Hamish has just taken Aria to the doctor this morning.  Should be an interesting visit.

Aria has a bad cough and low grade temp for about 3 days.  We are pretty sure it is a cold virus and she will fight it herself so haven’t taken into to Starship.   Asher has an ear infection and the same cough.  We thought a trip to the Doc to check her ears and chest might be the safe thing to do and hopefully avoid Starship ED.

Strangely enough before the Swine Aria has never had a cold or ear infection or anything like that.  Asher has had at least 3 ear infections.  

Asher is doing ok, he is on oral ABX but is coping fine.  Looks like things are finally clearing in a poo department.  Doc thinks it might have been Giardia.  Sigh.

Please pray for our little girl that her cough and temp might go soon, it is making sleeping at night pretty tough.