2009 March - Aria MacDonald

Archive for March, 2009

Another Wednesday update

Perhaps it is a bit OTT to update the site when I just did it 5 hours ago but there is so much going on. If you are dropping by for the first time today you might want to go back a few posts and catch up.

Aria has had about 3 hours sleep in the past 48 hours. We are so thankful that she just nodded off. She is super thirsty and super tired but was struggling to get to sleep because she just wants to drink. It is really hard to watch. The consultant was not keen to sedate her because her brain function needs to be watched carefully.

Looks like Aria will be in PICU another night. Her sodium is to high to go back on the ward. The consultant said that most kids would be unconscious at the level Aria is at but our girl is sitting up and talking which is nice. Looks like Hamish will stay the night in the family rooms again I will go home for Asher. Poor boy we miss him but he is having fun with Nana and Poppa.

Perhaps this is a dream, sometime I feel like it isn’t really me but someone else. Hamish’s sister sent us a really nice text about how well we are doing but for some reason I don’t feel like taking the credit although it is nice to hear. It definitely empowering and indwelling of something bigger than myself. Reminds me of something Aria’s Uncle Bruce used to say and probably still does- God is good, all the time God is good.

Well…what to say?

Thank everyone for your comments and support. I think we should get Aunty to update the website more often!! Great job and great post.

Aria is heaps better this morning and she seems out of place in the ICU with the rest of the kids who are sadly quite unwell. She didn’t sleep all night and watched videos and read the letter and numbers on the walls that she recognised. She is drinking HEAPS, 6 litres overnight. You know when you eat to much salty food you need an extra glass of water, same deal with Aria currently. Although it wasn’t a bag of salty chips that caused this.

This morning Hamish and I had a meeting with Dr E and Nurse Karyn and the business manager. They found the bag of fluid that caused this event. Many people going thru hospital rubbish (yuck!!) to find the bag of fluid. Turns out too much sodium had been added because of one of the hospital staff misread the label on the sodium vile.

So it was human error and also a stuff up at the lab which didn’t help. For some reason we aren’t angry although still confused I think about how to feel. I joked to Hamish that if we lived in American we would be rich now!!! I think we are just relieved that it isn’t another thing going wrong with Aria or something in her body that caused this ie her kidneys packing in.

Yesterday was awful. Aria stopped being responsive on the ward and her lips and face started to turn red/blue. I am not sure if she stopped breathing or what but they called a code and seems like 20 people rushed into the room. It was like we were in a bad episode of ER or something. It was very upsetting and hard for Hamish and I too see something so serious happen to Aria.

There is more to say but we are just thankful she is on the improve and doing better.

Intensive Care Scares…..

…..Although not so much a scare as it is a reality. Aunty Alex here, posting on behalf of Mummy and Daddy who will be spending tonight with Aria in PICU (Paediatric Intensive Care Unit) at Starship. Aria has a ridiculously high Sodium level which, this afternoon, was causing her to fade in and out of consciousness. To the average Jo/Joe a high Sodium level doesn’t sound like much but it’s actually very serious. The body is created to be at an almost perfect equilibrium, so when a particular level of something spikes or drops, the brain sometimes shuts off most other activity while it sorts the problem. Well that’s how it was explained to me anyway. At the end of the day being involuntarily unconscious is never a good thing and is VERY scary. The team on Aria’s ward saw to it pretty quick that she was transferred down to PICU which is where we have been since about 3pm. There’s no definite answer as to what caused the fluctuation in her Sodium levels but many signs are pointing to the fact that it could be human error. Hamish saw a bunch of nurses, the head of nursing education, the hospital business manager and Dr. E rummaging through the hospitals waste trying to find a mislabelled bag or something that will give them an answer. Aria has spent the afternoon and much of the evening being poked and prodded while the Dr tried to set her up with a lure that just didn’t want to be set up – so she’s been in a fair bit of pain and is a bruised and tender. She has picked up a fair bit since early this afternoon and even managed to sit up for a little bit. She is mostly conscious now, but still drifts out for moments every so often. Mummy and Daddy are tired – Daddy and Aria only had 2 hours sleep last night and today’s dramas were very draining for all concerned. There are so many thing that you can pray for but in particular please pray for healing and a good peaceful nights rest for Aria and for strength, courage, peace, rest and anything else you want to add for Mummy and Daddy. They really do appreciate your support and prayers. I’m sure either Mummy or Daddy will update you with the details soon enough.

Intensive Care Scares…..

…..Although not so much a scare as it is a reality. Aunty Alex here, posting on behalf of Mummy and Daddy who will be spending tonight with Aria in PICU (Paediatric Intensive Care Unit) at Starship. Aria has a ridiculously high Sodium level which, this afternoon, was causing her to fade in and out of consciousness. To the average Jo/Joe a high Sodium level doesn’t sound like much but it’s actually very serious. The body is created to be at an almost perfect equilibrium, so when a particular level of something spikes or drops, the brain sometimes shuts off most other activity while it sorts the problem. Well that’s how it was explained to me anyway. At the end of the day being involuntarily unconscious is never a good thing and is VERY scary. The team on Aria’s ward saw to it pretty quick that she was transferred down to PICU which is where we have been since about 3pm. There’s no definite answer as to what caused the fluctuation in her Sodium levels but many signs are pointing to the fact that it could be human error. Hamish saw a bunch of nurses, the head of nursing education, the hospital business manager and Dr. E rummaging through the hospitals waste trying to find a mislabelled bag or something that will give them an answer. Aria has spent the afternoon and much of the evening being poked and prodded while the Dr tried to set her up with a lure that just didn’t want to be set up – so she’s been in a fair bit of pain and is a bruised, tender and very tired. The good news is that she has picked up a fair bit since early this afternoon and even managed to sit up for a little bit. She is mostly conscious now, but still drifts out for moments every so often. Mummy and Daddy are tired – Daddy and Aria only had 2 hours sleep last night and today’s dramas were very draining for all concerned. There are so many things that you can pray for but in particular please pray for healing and a good peaceful nights rest for Aria and for strength, courage, peace, rest and anything else you want to add for Mummy and Daddy. They really do appreciate your support and prayers. I’m sure either Mummy or Daddy will update you with the details soon.

A bad night for Aria and Daddy

Poor Aria. Because she doesn’t have a central line and only a leur in her hand she is on maintence fluids. So that is fluid, 10% sugar and some vitamins but it isn’t TPN.

So her and Dad had a rough night. She was really thristy all night and didn’t pee much. Which is the opposite to what we were told where going to happen. All night she was asking for water and drinking and because her tummy is so small her tube couldn’t drain her tummy quick enough, so there was puking. She probably drank about 200mls +.

Hamish is just off to find out when she is going down. I really hope it is today!

There’s a hole in my wiggle dear daddy, dear daddy…

I got this text first thing this morning…

There’s a hole in my wiggle, dear daddy, dear daddy, there’s a hole in my wiggle, dear daddy, a hole.

When things pour sometimes they really come down, because on top of this, Asher who had been a bit better late yesterday and overnight, threw up at the house he gets cared for about an hour after I dropped him off, meaning I got to work for a whole 30 minutes. Thankfully work (Fisher and Paykel Finance) have been mega understanding about all Aria’s adventure.

So now on top of the mystery bowel blockage, we need to think about line replacement. Hopefully we’ll just use the same vein again…. Aria however is still feeling a lot better, so much so she had Anita up to 10:30pm last night wanting to play….. poor mummy. 

On a lighter note, Asher watched his first Warriors game on SkyTV last night and was our good luck charm for a nail biting Warriors victory… After our first try celebration got him a bit upset, the subsequent celebrations were more of the mime variety…. still he seemed to watch what was happening on the screen, now to indoctrinate him in the other important sports teams in his life, the Houston Texans and the Houston Rockets….

Anita Update Yes a hole is Aria’s central line!!! Argh!! I was really hoping to go home today but now she has to go back down to surgery tomorrow, home maybe Wed morning? Aria had to have a leur put in her hand. OUCH! But she was really good and the house doc got it in first time and did a great job. Aria quite liked her too and said Nice Doc when she left.

Pouring not raining

Argh!  It seems like Asher has come down with something.  He has a temp and is leaving me lots of interesting gifts in his nappy for me.  He is doing ok but not quite himself.  So that means we have to stay home, I can’t and won’t take a sick kid onto a ward with other children with fragile immune systems.

Hamish is at Starship waiting for the surgeons who are running the show this admission.  Normally it is the Gastro team and maybe the ID team.  Aria’s nana is going in so Hamish can come home to take care of Asher so I can go back in to do the night shift.

Aria is better this morning.  Although still not walking around.  She is on 3 different ABX and we are hoping to get them down to 1 so we can go home.  But her calcium is crazy high so that needs to be fixed too.

So with 2 sick kids life is a bit tough.   I hate being home when Aria is in hospital.  It is really lonely, you go from being surrounded by people and 0 privacy to no one around and silence.  Extremes I guess, although Asher is here but he isn’t such a good conversationlist currently although he does play a mean game of Boo!.

Saturday Morning

Aria had a good night last night. Very good, no pukes and a good night sleep. This morning the Docs, Surgeons and us all agreed that her tummy was heaps smaller. She has perked up a bit too, sitting up and speaking. Not quite walking yet but still better.

She is doing so well. She let three different doctors feel her tummy this morning without complaining. Including a group of surgeons. Not sure why but surgeons always visit in big groups, like a pack? Or is it herd or a gaggle of surgeons?? Anyway it can be quite full on for a little one but Aria was fine. She even pointed them out when we went passed them having coffee in the main hospital.

So we hope tomorrow she will be better still. Seems like there is a build up of ‘stuff’ in her intestine, which of course just stays there and can’t get out. It looks like it is giving Aria some grief now but hopefully she will continue to improve and nothing dramatic will have to be done. There is talk of another washout under G.A but hopefully might avoid that too depending on how she goes.

Thanks for checking in on us

In and Out and In again

Aria is back in hospital today, Anita took her in because she was still pretty listless, she seemed in discomfort and a temperature was playing hide and seek with her.

This time in ED they did a lot of tests, blood, urine, xrays and it was disovered that her tummy is full of fluid and gas. This is what is causing her discomfort. There not sure what is causing the gas, possibly a gut infection, but they have started a broad range of treatment to try and sort things out. One of the things they tried involved Aria going down to theatre to try and encourage the gas out.

The amazing thing about today was how awesome and brave Aria was. She was happy to let the Dr’s and nurses take her observations, to have them look at her tummy and take the samples they required. She said a nice thank you to the radiographer who XRayed her tummy. When she went to surgery she cuddled me nicely as they put her under and when we went to collect her form recovery she was talking to the recovery nurse and waved and called out to her friend Green Dolly (Doll Doll) for cuddles.

Aria never fails to amaze and inspire us. She is a great kid and we love her to bits. Hopefully we will see her get better really soon and we will have Aria in all her glory back with us soon.

This is weird

Well Aria is home but not well. It is weird having her at home when she is acting so sick. She is flat out on the floor either sleeping or just staring. She hasn’t spoken much or walked in about 2 days.

But no temp and her heartrate is fine. Her eyes aren’t particulary yellow either. Her tummy is pretty big though but her outputs are normal.

Apparently she perked up heaps at hospital this morning but was flat all afternoon. We are disappointed because we had a family dinner planned for tomorrow night but knew Aria wouldn’t enjoy her cousins as much being so down. Although her cousin Venisio, Aria calls him PoPo does make her laugh

We kinda what to go back but really have no reason too and we know the hospital is chocka block too.

Watch this space I guess.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”- Jeremiah 29:11