2008 January - Aria MacDonald

For those of you who are familar with Mr Strong from the Mr Men series, this is a word he says a lot.  He is always breaking things because he is so strong.  Mr Strong is Aria’s favourite Mr Men character, with Mr Daydream a close second.

Anyway sorry to all those who thought Aria wasn’t well and in hospital.  Thanks to those that emailed asking.  Sorry to scare you, I was just concerned she might be getting sick, ooops.  She is fine currently 🙂

We had a great day today.  Ali- how on earth did you know it was my birthday?  Thank you. 

We brought Aria a little blow up pool to splash in.  She loves splashing.  We can’t really take her swimming at pools because of the bugs floating around, so her own pool we can empty and clean after every use is great.  It was only $6 from Plastic Box but she loves it.  It is nice to see her having such a great time in water, particulary in this heat!

Pinky Pie is the name of Aria’s My Little Pony that she got for christmas from her Aunty Megan and Uncle Bruce.  It is super cute, it comes with a little babies bottle which you can fed it and it makes sucking noises.  It talks and says things like ‘I love you mummy’ and ‘Pinky Pie hungry’  Aria loves to push her foot and make her talk.  She cradles the pony in her arm and feeds her with the bottle.  Very cute.  I am glad Aria enjoys this pretend play considering her understanding of using a bottle is fairly limited.

So I said to Hamish at the beginning of the week that I would eat my hat if we weren’t in starship by the end of the week.  So Friday is here and I might be dining on hat tonight!!  Yay still I have doubts that we will make it to clinic on Tuesday.  Aria asked to go to bed at 10 am this morning, very strange. 

Still we have a big weekend planned.  Hamish has four days off yay, Aria likes having Daddy home and so do I.  The 29th is a big day, Aria’s kidney ultrasound, clinic and Ashers 6 weeks shots.  Busy day 🙂

…you know that feeling you get in the pit of your stomach when you know something bad is going to happen.

Aria is not herself, she is currently lying down in bed, awake at 11am. I am happy to leave her there cause I know she will tell me if she isn’t happy and wants up. I am hoping it is the heat and the muggy weather that is making her tired but I fear otherwise.

It is hard living with the threat of hospital hanging over your head. Worst than that is that Aria is going to be sick, again and feel bad, again. If I could swap with her I would in a second.

I went in last night and felt her head. It felt warm and my heart sank. “here we go”, I thought. I got the thermometer and it read 37.1. I know, normal right. Well not for Aria, nothing to panic about but she is normally 36.6-37, never 37.1. It amazed me that we have been doing this so long I can feel by touch that her temp is out by .1 of a degree.

Thankfully nothing came of it, yet. Do I sound like a pessimist? Maybe I am, I don’t mean to be but I can’t ignore that nagging feeling.

*Sigh* watch this space. May I be eating my words!!!

I am enjoying a moment of quiet while both kids are asleep at the same time!  Yes it is 9.30 and Aria is asleep. She has started this habit of waking up in a real grump at 6am and demanding to get up.  Yikes, we get her up for about 2 hours, which is as long as we can stand the yelling and when her pump finishes and back to bed!  Then she sleeps and wakes up an entirely different person.  But I hope this stops soon or she isn’t brewing yet another ‘something’ in her line.

We have a kidney ultrasound on the 29th of Jan.  Will be a big day, with clinic also that day and Ashers 6 week shots poor boy.  Hopefully the results of that ultrasound will give us some answers, finally, to the state of her kidneys and when transplant might be.

 Thanks for checking in on us!

In case you missed my last post entitled Grumpy click HERE. It contains an update about transplant timing or lack of it!! Ignore the rest of it though because we had a great weekend despite me being convinced antibiotics would keep us chained to the house and poor Aria chained to the pump.

After the morning dose we went to Sylvia Park for a bit of shopping with Aunty Alex. We decided to stop at a cafe and have lunch. Aria was so well behaved. She sat on the seat next to Hamish at the table and played so nicely. Who would think an 18 month old would be such a great lunch date companion? She is so funny as she pulls faces and laughs away at random stuff. They gave her a takeaway coffee cup to drink water out of. She drank water like a big girl and held her cup with her little finger in the air, so funny. We greatly enjoyed her company and it was a nice change to the previous weekend when she was hot and not feeling so great. Asher was also well behaved and slept the whole time in the pram. We have such great kids.

Sunday was good too being at home and doing family stuff. Aria’s fave movie is The Country Bears. She saw the last five minutes of it on TV once and loved it. Since then she would hold up her plastic grizzly bear figure and point to the TV. So we got it for her for Christmas. She doesn’t really watch it just likes to see the bears singing in the bonus features. Her other hero at the moment is Mr Strong from the Mr Men series, she loves the books but Mr Strong is the fave. It is quite interesting to see her take an interest in different things.

Grumpy.  Sometimes I feel grumpy (don’t we all).  I was telling Dr E I was a grump.  We still don’t have any answers to Aria’s kidney function.  The transplant date will be set when we have some idea of Aria’s kidney function whether it be good or bad.  We had hoped to get test results back in Jan.  We have got them back but they are inconclusive. 

 Truth be told though we are not really grumpy.  Although I am grumpy that Aria’s antibiotics mean we can’t really do much this weekend or this week.  They are twice a day and take an hour and a half each time.  Although getting some perspective on the situation, they increased the dose to twice a day because Aria’s kidneys where processing the doses so well.   Which might mean they are functioning okish.

Anyway we are in no hurry to go to transplant.  Bowel transplants are risky and the operation that might save her life might also end it.  Still it is the only option for Aria to live so we step out in faith.  When exactly we will be stepping out is not for us to know at this stage.  It will be revealed in good time, Gods time, which is always perfect.  Till then we are to be patience.  And not grumpy 🙂

Phew, what a busy few days!

We are home, yay!  On once a day antibiotics which is nice although the process is a bit more full on than our past home antibiotic experiences.  Still Starship has worked hard to get us home and have made provisions for us so that is nice.

Gosh it has been a hard four days, feels like a month!  Glad to be home and it all behind us.

Good news, Aria has a ‘nice’ type of Staph infection in her line.  Nice being that unlike Staph Aureus (the one she had last time), this Staph, Staph epidermidis doesn’t seed.  That is, it doesn’t spread around the body and attach itself to heart valves and bones etc etc.

 Bad news it that it is treated with a type of ABX that is rough on the kidneys and her kidney state is pretty precious.  We will need to test the levels on the ABX in her blood and adjust the dose.  Which means we won’t be going home as soon as we had hoped.  And Miss Aria has to have finger pricks to test the levels 🙁 Ouchie, poor bubba.

It is pretty tough this time around with two babies to care for.  Pretty much Hamish looks after Aria and I look after Asher.  Each of us misses the other baby and each other.  But we will cope somehow.

Miss Aria had a pretty good night last night.  Her temp was down to normal except for a little spike at 2am.  Pretty normal, it seems as though the bug muster a final attempt in the wee same hours and then go out with a bang.

So far the blood culture we took last night isn’t showing any bugs which is good.  Still early days though, if it doesn’t grow anything for 24 hours then we will be happy.

Hopefully Aria is beating this and we will be home soon.

Well we feared the worst and the worst has happened.  Aria has a line infection.  It is that darn Staph bug again and we are just waiting to find out which version of staph it is.

It is quite disappointing as we have manage to avoid line infections fairly well up until recently.

Tonight is a key night.  Aria’s temp was 37.1 at 6pm, if it stays down over night we hope to be home soonish.  But she is better this afternoon which is great, demanding walks etc etc.

We had both kids in hospital today.  It seemed a bit strange having a perfectly healthy baby hanging around in hospital but I guess this is the situation Asher has been born into for better or worst.

Stay tuned