2010 April - Aria MacDonald

***UPDATE***

Trach is in.  Everything went well and her vocal cords and airway looks great.  Aria is awake and doing well

Aria pointed to the book shelf today and asked for some books.  She told me it was a ‘little one’ she wanted.  Ok I thought I wasn’t going to show her every single book and get her to choose so I brought over the whole container of books.  We sorted thru them twice and Aria shook her head to each one.  We got to the end and she found her book and pulled it out.

What did she pull out?  Dragon in a Wagon?  No!  A fly went by? No! The little red hen?  No!

Miss Aria decided that the reading material for today would be the Parents Guide to Pediatric Stoma Care.

Ummmmmm ok then

She look thru the book thoughtfully and pointed to the pictures.  We talked about her stoma and how it was different to her NuNu (g tube).  She patted her stoma bag that sits on her left side.  She looked thru the book a second time and stopping at the pictures and pointing and looking purposefully.  I asked her if she wanted a stoma bag to play with and she did.  So I got one and she held it and played with it.  I asked her if I should put it on Green Dolly and she nodded and helped me.  So Doll Doll has a stoma bag on now too.

For those not familiar the end of Aria’s new intestine comes out to her skin and you stick a bag over it and it catches the fluid or stool.  Maybe one day it will be connected to the hole God intended it to but for now that is fine.

Now she has fallen asleep with the book open in front of her- cute.

We had a big response from the Attitude program that aired on Sunday morning.  Aria’s fundraise online page has been very busy!  Thank you!

Hopefully we have some new followers of our journey.  Newbies your homework is to read thru the past 500+ posts !!!!  Ha ha just kidding- that would take awhile.

New Zealanders- if you missed it you can watch it here. Anyone outside NZ you can watch an advertisement- lucky you!

Aria goes for her tracheotomy tomorrow at 1 pm (US Central) 5am Wed (NZ)!  Please keep her in your prayers.  It is a simple procedure under GA.

My husband has a great perspective on life and faith.  I rang the PICU at 7.30am to find out how Aria was doing post extubation.  Aria’s nurse broke the news to me that they were reintubating very soon because her gases were bad.  There was something good about someone else telling me the bad news.  It is hard to hear bad news from your husband or wife.  So he passed the phone to Hamish and we talked about God’s plans for Aria and the positives of a trach.  Mostly likely Aria will only be on the vent at night and during the day she will go on oxygen and be able to go for a walk.

You must know how awesome and brave Aria was during the almost 24 hours off the vent.  She fought and struggled but her body was not able to accomplish what her mind wanted.  She was so brave and did everything requested of her, coughing and allowing the nurses to put a tube down her nose to suction her (not pleasant).  Aria is simply amazing, I will never be able to express that.  She endures so so so much, sometimes I simply can’t blog about how tough her life is or how strong she is cause I would just fall to pieces and that’s not something I can do.

We have moved into our new place.  We sent our first night there last night together.  It was wonderful and horrible.  How do those two things go together?  They don’t except in this crazy world.  It was beautiful to escape the hospital and have a house and space.  Asher is having a great time and is loving it.  He can have a bath and lots of room for his toys.  Stephanie took me shopping and Brad watched Ash for a bit (thanks guys) they stayed for dinner and we laughed.  But there was emptiness and guilt. A big part of our family was missing and it hurts.  It hurts her clothes are still in the suitcase and her room is empty.  Guilt that we were relaxing while she is lying in a PICU bed.

We haven’t sorted the logistics of how things will work with our new place.  It is about a 20 min drive and I dont have my license (yet- that is another post) so it is going to be tricky for a bit.  I want Hamish and I to spend every min with Aria- never do I want her to be without a parent.  BUT the reality is in this country, without family and the length of her hospital stay, that isn’t realistic for Asher or our marriage and sanity.  Please pray for wisdom.

Thank you for your support on extubation day.  I know the good news posts always get more comments because everyone cheers on and it is hard to know what to say when things aren’t going so well.  Thank you for cheering Aria on and praying for us.

I’m sorry to say that Aria has been re-intubated. After a very valiant effort, force of will lost to physical limitation.

Aria’s right diaphragm which is partially paralysed kept on creeping up and up over night limiting the volume of Aria’s breaths which meant despite all her efforts she just couldn’t clear enough carbon dioxide out of her system.

She lasted just shy of 24 hours, her best effort by far. She did really well and we are very proud of her.

So the next step in her journey is to have her rest up over the weekend and have Ear, Nose and Throat come in on Monday and organise a tracheotomy. As for the diaphragm issue, we’ll give it more time to heal and if it is still dodgy further down the road they can look at tacking it down so it won’t cramp her lung’s style. They can’t do this now as they don’t want to mess with her abdomen too much because of what has already gone on in there.

Obviously we are a disappointed that this attempt didn’t work out, we were very hopeful after she started off so well. However we accept that she isn’t quite ready yet and that the trach is the right thing for her. As time progresses with the trach she should be able to get out of her PICU room and move around a bit and even have days when she is only on the vent at night so that is something to look forward to.

Through all this I take comfort in my new go to verse, Psalm 145:17. In the translation I appreciate the most it says…

God is righteous in all his ways, he is kind in all he does.

This is really comforting to me because I believe this and know that in God’s far superior wisdom, this ‘failure’ is an act of kindness towards Aria and us.

Thanks for all your prayers for Aria over the last day, we know God heard them all, and has answered it in the way that is right for this journey.

6pm Gas still good (49)!!!  Next one midnight

LAST GAS IMPROVED AGAIN (48)- almost perfect WOW

O2 stats 100%!

Temp 36.7

Heart rate 132

Oxygen rate dropped to 80%!

All good 😀

ICU Doc yelling down the phone GO ARIA!! after the tech phoned in the last great gas!  All good

The tube is out!

Aria got off to a hairy start pretty quickly.  Her O2 stats dropped to 84 and her gas went up (58).  Both bad both scary.  And this was within about 15 mins of the tube being out.  It was not looking to be off to a good start.  Gosh it was so so hard.

So they bumped up her oxygen going into her nose to 100% and made it go in faster.  She is on the high flow nasal prongs.  They also suctioned her nose a bunch of times and that helped and gave her some meds to calm her down.

The next gas stayed about the same (61) and they said they would give her another hour and if it kept getting worse they would intubate. 🙁

Hamish came back from dropping Asher off at daycare and my head was such a mess.  I just sat in the cafe and pleaded with God and begged him to allow Aria to fly and for us to be at peace with whatever He choose for today.  This verse came into my head

This is the day the Lord has made, I will rejoice and be glad in it.  Psalm 118:24

This is God’s day and we will rejoice should He choose extubation OR a trach.

This hour Aria’s gases came back IMPROVED !! (52)

And her O2 stats are 100%

WOW, we have NEVER had improved gases on extubation.  They had given her another 2 hours now to see.

PLEASE KEEP PRAYING!!!

Wow loooooong day and I am super tired with a lovely headache to boot.

Thank you to Brad, Stephanie, Randy and Eric for helping us move.

Please please be praying for Aria tomorrow as we try another shot at extubation.  We are so so keen for her to fly of the vent.  Please pray it goes well.

We had a really nice weekend (it is Monday morning here now).  Aria and Asher played so well and Aria was so happy to have her brother around.  He is always around but up until now she hasn’t been so interested.  On Saturday morning she let him give her a kiss and returned it (as best she could with a tube in her mouth)  On Sunday she was so sad when Asher and Hamish left she cried.  Again she has no voice but her tears and eyes gave it away.  So Asher came back and lay down next to her on the bed and she seem to really like that.  He was still and didn’t wiggle around and they watched some Barney.  Will post a pic.

While Aria slept the three of us went outside and played with the ball on the hospital lawn.  The weather was lovely, not to hot and Asher ran around like crazy.  We were the only people out there and we took off our shoes and ran around.  It was great.  One of our fave nurses was on both days this weekend so we knew Aria was in good hands- all the nurses are great but we have our faves!

We had some visitors on Sunday arvo.  Elaine and Eric came in and brought us yummy ethnic food from Juba.  Asher ate heaps of it!  Didn’t might the spicy flavours at all.  We loved the beautiful lump of lamb and chicken.   So nice they would come on a beautiful day and chat with us.

Extubation is planned for this Thursday.  Today Aria’s heart rate and temp are up but her white blood cell count is great at 11.  They think maybe the ABX are giving her the temps.  We hope and pray by Thursday everything is peachy.  Today we hang tight and pack.

We have had some technical difficulties with the password protected posts.  I got a flood of email asking for the password I was kinda surprised cause it was just our address!!!  We were happy for the Lied address to be open because we were under the hospital’s ‘protection’  but we aren’t going to publish our address on the internet for all to see now we are at a private address.  We will be using the same password so please keep a note of it. Hopefully we won’t need to use it but we do like to have this feature up our sleeves.

This week is going to be crazy busy with moving, the film crew and extubation so the blog might go quiet.  But we need your prayers even more !!!  Thanks!!!

It is saturday night as I write this and we are pondering the week ahead.

Aria is most likely going to get another shot at extubation on Monday, she had another 14 hour sprint today with perfect gases.  We are so so hoping she flys.  For lots of reasons the smallest being I want to go a kids clothing sale in the early evening and want to be able to leave Ash with Hamish (or if anyone would love a couple of hours with the best 2 year old in the world….?).  The biggest being IT WOULD BE COMPLETELY AWESOME TO HAVE ARIA OFF THE VENT AND NOT HAVE TO HAVE A TRACH!!

Tuesday we are having the inspection of our new place and our KIWI VISITORS arrive!!!  The film crew, Emma and Ben are coming back to do some more stuff with us.

Wednesday is filming and MOVING DAY!  Omaha lovely people- if you are able to give us a hand please let me know?  Anytime from 3pm onwards.  Even if you could spare us an hour that would be fab.  Warning- you may find yourselves being filmed but you can say if you don’t want to.  We just need help taking boxes down the lifts and into cars and over to our new place.

We will probably keep our room at the Lied until Thursday night/friday morning although if Aria is off the vent we will be able to room in with her!  Another big reason to pray our socks off that she flys on Monday.

Thankfully (although we were disappointed) the move to the new PICU was put off for another week.  The current PICU is an old adult ICU and it is very average indeed so we are looking forward to moving.

So lots of big things this week please pray for us and Aria.

Aria had a big temp this morning 39.8!  Yikes!  They restarted an ABX they had stopped yesterday and now she is perfect at 37.  Nothing major to report apart from that.

CONTACT me if you don’t have the password from the post above

Today Aria and Asher got a lovely gift from the Child Life intern who has been working with Aria and Asher.  She asked if she could study our family for her school assignment and we said yes.  She had a couple of interviews with me and did some fun activities with the kids.  Today was her last day- stink- we will miss her.  But she gave the kids this beautiful hand made book of fun recipes for activities.

So you can see how lovely the book is (think scrap booking).

So Aria made ‘clean mud’ today.  She LOVED it!  It is basically grated soap and lots of toilet paper which Aria has fun pulling off the loo paper and scrunching it up and throwing it in the mix and pouring in water.  She used both hands and played for ages, we were so excited.

Aria was doing pretty well today.  But just tonight her temp has gone up and her heart rate is back in the 160s.  Hopefully it is just a blip.

A interesting article on organ donation in NZ

Aria and Green Dolly are on the front page of the Dom Post today, little story along with others about organ donation.

Well Aria was doing great and we were seriously going to give her a shot at extubation today.  But late yesterday her blood cultures came back positives for the same bug she had last week and has been fighting since transplant.  Her heart rate got up to 200 this morning and her temp up to 39.5!  She is not a happy girl.

Things have settled a bit and she is in the 150s and 37.2.  Lots of sleeping today and not as active and happy.

She did a 14 hour sprint yesterday in preparation for extubation today and her blood gas cam back perfect.  But she is back on her regular vent settings today, which actually are still pretty low.  So things are on hold because we want her to be as strong as she can be to give her a good chance to ‘fly’ off the vent and breath by herself.

Asher and I got out with Erika and Emerson to the Omaha Children Museum again and to Jason’s Deli (great organic fresh food!).  We had a great time.  Part of me wanted to sit and cry happy tears as I saw Emerson running around and laughing and playing with Asher.  Totally amazing given all she has been thru.  I just love talking to Erika, a inspiration and just so positive but honest with me too.

Please keep Aria in your prayers- she needs healing and health right now!