2010 April - Aria MacDonald

This photo was taken today.  Aria was about to go to sleep and was trying to put Green Dolly on the pillow next to her, she needed a bit of a hand from Daddy but got Doll Doll in position.  Then she asked for a ‘hat’ for Doll Dolly aka a wet flannel/wash cloth and a hat for herself.  Once they were both in position Aria went to sleep.

This is Aria and Asher watching the Wiggles on the computer together.  Very cute- still big Wiggles fans

Aria playing the drums during her music session 🙂

Our Redeemer Lives!

What a brilliant day the MacDonald’s had thanks to the kindness of many!  Thank you to everyone.

Asher and I went to Life Springs Church this morning.  Phew!  Doesn’t look like I can manage a church service without crying.  Given our intense situation and the journey of faith God has called us too it is impossible to praise and worship without having an emotional response.  I have learnt to embrace it more and go with it because it brings me to a deeper understanding of God and His work in our life.  And Carol and Cordell’s daughter Karin was kinda enough to let me cry on her shoulder for a bit while Carol passed me tissues!

We went back to the Bullis’ for lunch and Hamish joined us later after Aria got her dose of sedation so she would be asleep and not miss us.  Asher took part in the neighbourhood easter egg hunt we were very kindly allowed to join in with.  Asher had a little bucket and Cordell took him around to hunt for little plastic eggs with goodies in them.  It was really fun for him.

Later Hamish played basket ball with the guys on the street and me and Asher played ball.  Honestly it was lovely to enjoy the American lifestyle.  It felt very American and very good.  The sun was shining and it was warm and lovely.

We returned to hospital loaded up with food and easter eggs and washing.  Carol always lets me do a couple of loads at her place which was great cause the washing machine is out of order here!  Can’t wait for my own washer/dryer!

Anyway Aria was asleep when I got to the room.  She woke up a bit later and we unpacked her little gift bag from Fran and the boys.  She got a pinwheel which was clear plastic with pink flowers, you know those things you blow and they spin around.  She LOVED IT, she was trying to blow it but of course her airway has a tube in it so she couldn’t.  She then did some painting and opened more of the little plastic eggs.  We had a great time.

We were so encouraged by her willing to blow the pinwheel.  The big news of the day is that they are going to try one more shot at extubating her before putting in the trach.  We were kinda surprised and nervous.  I even thought ‘nah lets not bother’  But her trying to blow is a great sign and also she has a great cough so maybe she is strong enough.

Wouldn’t that be amazing to avoid a trach and have Aria tube free and talking and breathing by herself!  Please pray hard for this, God can totally do it.

Her kidneys are peeing like you wouldn’t imagine!  She totally avoided dialysis- God answered our prayers!  She is drying out and her legs and feet look great.

Anyway I bet this is a really long post so I better sign out.

So it seems like Aria is going to be on the vent for awhile longer.  So we have made the hard decision to give her a Tracheostomy.  I know- EEEEK right?  Click on the link and you can read more.

They aren’t as scary as I imagined them to be and there are a lot of benefits to having one.  When they first mentioned it ages ago we were horrified and annoyed for them bring it up.  But turns out it will be a good thing for Aria.

Firstly she won’t have a nasty tube in her mouth and down her throat anymore.  She is currently on a big cocktail of drugs to help with sedation and keep her from pulling the tube out that is taped to her face.  She will be able to come off those drugs and enjoy life a lot more.  AND she might be able to disconnect from the vent for a bit and put the oxygen prongs on her nose and go for a walk for an hour or so.

Downside is that she wont be able to talk still because there will always be air flowing into her trach.  Also there is talk of her having to keep it in for a year but hopefully it will be around the six month mark.

They had an OR time for today but we declined because we weren’t ready and hadn’t asked everyone their opinions but it seems like everyone is in favour of it and believe that it will give Aria a better quality of life.  Looks like next week she will get it done under GA.

There was talk of dialysis again yesterday which was pretty distressing.  But Aria’s kidneys have picked up and she is peeing pretty well so looks like we have avoided that one for now.  Overall I think she is going well, her vitals and blood pressures are good and so is her temp.

Interesting ‘celebrating’ another holiday again in the USA.  Today is Good Friday and life it pretty much normal.  All the shops are open and hospital has all the regular week day staff on and I don’t think Monday is a holiday.  Apparently America doesn’t shut down like NZ does which is surprising given that I perceive the US to be more Christian country than NZ.

The weather is changing and it is becoming summer.  I am finding it difficult and strange to have summer at this time of year and not be heading into the Christmas/Holiday season. The change of seasons remind me that time is marching on.  I would be quite happy for it to stay winter forever.  It was easier being stuck inside when it is freezing out.

Still we have lots to look forward to.  The new PICU opens on the 12th of April and we are moving into the condo on the 14th.  So we will have two new homes.  By the way PICU is pronouced PIC Ewww not PICooooo.  The ‘Ewww’ way is how the Americans say it and we say it ‘Coooo’.  Honestly sometimes I think I speak another language!

Aria had a better day today.  Looks like her infection is on top of which is great news because bugs in your blood is very bad news.  We are still getting on top of her sedation and that has been very hard but yesterday was better too.  She is doing so well and fighting all the way.  The Intensive Care Doc called her ‘The Party Girl’ cause Aria isn’t one to take sedation well.  Many times we have had to give her big doses to be comfortable.

The pass couple of days have been very painful and difficult.  We have become friends with a lovely couple here and their sweet daughter Almariah had had a bowel and liver transplant a week after we arrived in Omaha.  Yesterday Almariah passed away due to a medication error in the PICU where Aria is.  Our hearts are heavy for her parents who are wonderful people that fought hard for their girl.  Almariah was a fighter too, you would never believe how strong and beautiful she is.

We only share this publicly because it was on our news last night.  Her parents have chosen to speak out and stop this happening to other children.  Please know Aria does not receive this drug and we have had many conversations with staff here about Aria’s care in light of this horrible event.

May your spirit be at rest  Almariah, we will never forget you.   Kenya and Greg our prayers and thoughts and tears are with you now and in the coming days.