2010 April - Aria MacDonald

It has been a big week and we end on a pretty good note.  Aria had another great day, sitting up in a little kiddie sized wheel chair for over two hours at two different times.  Yay-so proud of her.

The medical report is all good.  We were a bit nervous about her kidneys yesterday cause she didn’t pee all day but overnight and today she had regular nappies/diapers.

There is a prayer meeting Sunday morning NZ time at our old place- Sturdee Road.  I have sent my sister a list of prayer points and praise.  Thanks for organising Alex and being proactive.  Prayer makes a HUGE difference!!!!!!  Please attend.

Anyway, thanks again for your support.  Yes Aria was on the front page of the Dom Post yesterday.   They have been following Aria’s story for awhile now and we appreciate their support.

Wow !!

Aria had a great day today, we are so encouraged.  Lots of playing and sitting up and THREE smiles at different times.  The first time she made herself smile by knocking on the door of her little toy dollhouse.  The second time was skyping with Rebecca and seeing her fave doggies George and Kaylee.  Finally when reading her Winnie the Pooh book and recognizing the little song in the book.

Aria pointed to the stethoscope and put it in her ears and listened to Green Dolly’s chest

She let me put a bow in her hair and she played with stickers

She got out of bed (with lots of help) and sat in the chair for half and hour and played

It was such a good day, lots of her personality showing thru and no asking for water.

Also we have good news of the whole Pseudomonas and relisting front.  We have been waiting for cultures to come back from her blood urine and lung junk.  We have been very very concerned that this bug would morph and they wouldn’t be able to treat her.  However the urine and blood are clear and the lung junk came back with Pseudomonas BUT it is sensitive to 7 different ABX !  But it isn’t causing her trouble so they won’t treat it.  To top it off they believe that IF IF IF Aria did culture pseudo in her blood that was fully resistant they still believe they would be able to treat if given the research that is out there on this bug but delivering the ABX in a certain way.

Both the transplant teams and the Infectious Diseases team are being very very aggressive with giving Aria a chance for second organs.  Lots of talking and researching and brain storming.  We so appreciate the fact they are fighting for her like we are.  Still they are honest with us with the possible outcomes good and bad of this second go.

Today we are upbeat and positive and thankful, so very thankful.

Firstly thank you for all the beautiful messages and comments yesterday- they mean a lot to us.  Please read the update HERE if you missed it.

Aria is doing better this morning.  Her O2 stats are back at 98/99 and staying that way.  A big huge PHEW!  They changed her trach appliance at 5am this morning when her O2 dropped into the 70s and that seems to have fixed the problem.  Also she hasn’t had any water for 12 hours and that has helped too.  We are going to have to be strict with giving her water- please pray cause it is going to be hard.

Her heart rate is 150s which isn’t great but her temp is around the 38s- that isn’t great either but not terrible.

We have also put her NG tube on free drainage so the contents of her stomach is coming back up and that is stopping the vomiting.  When they did her transplant she lost her gtube to drain her stomach.

But today we feel better because her O2 dropping yesterday probably wasn’t due to infection.  Yay.

A couple of people have asked why she is getting all four organs again.  There are two reasons.  First up the organs come in a block, all attached together, not sewed in separately, better to use the donors original plumbing and blood supply.  Also we know for sure the bowel has rejected but perhaps the liver and kidneys have rejected too.  We don’t know for sure unless we biopsy them which requires a trip to the OR and a GA.  But there isn’t much point doing that because it doesn’t change how we treat Aria and puts her thru something not needed.   Hope that makes sense.

UPDATE- Aria has been sitting at 100% since this morning!  Excellent- back to normal

UPDATE:  Aria is relisted at status one for all four organs again as of 4pm/9am NZT today.

So we will just come right out and say it.

Aria’s new bowel has  rejected and her transplant has been unsuccessful.

This is of course profoundly bad news.  Her new liver and kidneys are ok and coping.  But you might of noticed in recent pics that Aria is very yellow, her bili is as high as it was before transplant.  This is because her new bowel has holes in it and the bile is draining her to abdominal wall and into her blood stream.  The liver itself is ok, not too TPN damaged, we know this because her other numbers are fine.

Also she has been battling infection, in particular a bug called Pseudomonas.  This is a nasty bug and it has morphed each time she has had it and it has become resistant to antibiotics.  The last time it was cultured, there was only one drug left to treat it, which we have used now. This doesn’t mean the next time she cultures it, it will fully resistant but there is a reasonable chance it might given it’s past history.

Today Aria is more unstable than she has been previously and we are concerned something is growing and praying hard it is not the dreaded pseudomonas.  Her vent settings are up because she is struggling to maintain her breathing.  Perhaps it has something to do with the water she is drinking and the fact she is throwing it back up and it is going into her lungs and throat.

Aria is in a tight spot for sure.  The light at the end of the tunnel is dim and getting smaller.  When we found out about her rejection there was a moment when we sat on the couch and cried and I shook my fist, literally shaking and crying.  I knew in that moment my faith could go either way- I could hate God and be like ‘are you freaking kidding me Aria has to do this again’ (honesty)- why does it have to be this way!?  Or we could cry out “God you are still Good- we still trust you’.  Our decision- God is still good.  Still loving, still kind in everything He does.

Psalm 27:13-14

¹³ I am still confident of this:
I will see the goodness of the LORD
in the land of the FREE.

¹⁴ Wait for the LORD;
be strong and take heart
and wait for the LORD

We changed the word living to the word FREE.  We are still standing firm with God- we will continue to see His goodness in the land of the Free, America, where he has called us.

We beg and plead with God to please overcome that huge huge mountains that stand in Aria way.  And the same time we give her fully over to Him, asking that He may take her to Glory should that be His will.

Today Aria will be relisted for another bowel, kidney, liver and pancreas transplant.  We wait again for organs and know they need to come soon.  We are sad for the family that donated Aria’s current organs that they aren’t going to provide her with long term life, but they did buy her precious time.

This journey is so EXTREMELY tough and hard and is about to get harder. We know Aria’s recovery will be tougher and Hamish and I are weary from having to face transplant again and watching our precious girl suffer.  We have done a lot of soul searching as to whether we want to put Aria through this again.  It has been very hard, yet very easy.  We see lots of fight in her still, she isn’t giving up and the team here are unanimous in their decision to relist her.  Hamish and I will fight for her and give her the opportunity to live until God makes it clear otherwise

Please surround us with your love and prayers knowing that God is allowing us to do something I NEVER would of thought I could do.   Please join us in begging God for His mighty overuling and supernatural healing in Aria’s body- only He can do this.

There was a grand speech planned this morning for rounds.  Thankfully I didn’t need it.  The attending (consultant) was well aware of our concerns thru the various channels.  For those of you who saw the TV program of Aria last weekend Dr Botha was the surgeon they interviewed about Aria and who did her transplant.  For some strange and spooky reason he always seems to be rostered on the week we need him.  Actually nothing strange and spooky about it- God is good!

Anyway he is our fave and I know we shouldn’t have faves but we do.  Actually they are all good but Dr Botha knows how to have a laugh.  Thank goodness.  Americans by in large are a serious bunch or perhaps they just have a different sense of humour.  I remember clinics with Dr E and we just laughed all the time.  Honestly, dealing with families with chronic illness you either laugh or cry.  We also like the fact he is honest and tells it how it is.

Back to Aria.   An xray and a swallow test was ordered.  The xray was to check the position of the trach and that came back all good.  The swallow test is tomorrow, that will show us were the water is going and why it is coming out her mouth and nose all of a sudden.   Aria’s labs look fine, her sodium is 139, normal and her calcium is high because she is sitting around a lot.  Her glucose gets tested every 2 hours and insulin adjusted accordingly.   So there is a bit of a blank there although they are changing some of her meds which might help.

Aria just chugged back the ice all day today, which worked better than water.  She can feed herself which means we don’t have to hover over her so much and she gets less water overall.  Hamish just sucked most of it out of her nose, fun times.

A new day tomorrow, thanks for your prayers and support.

Gosh today was one of those day were you just want to yell THIS LIFE IS SO HARD!

Aria has been really thirsty for almost 10 days now.  Like really thirsty.  There is nothing else on her mind but water- she won’t do anything else.  Sometimes we have moments of peace and can distract her, like with skyping yesterday.  Some days she is sleepy and it isn’t so bad.

Since she got her trach she has been throwing up.  Not sure why but the water she drinks is coming straight back up.  So the team have asked us not to give her anything but ice chips and sponges of water.

Ummmmmm- tui billboard anyone!?

Translation for our American friends YEAH RIGHT

So for the pass four or five days we have been doing battle with Aria, fighting with her as she begs for water.

For those of you out there reading this that are parents- can you imagine your child begging you for water for hours on end and having to deny them.  It is like torture.  I love my daughter so much I would do ANYTHING for her, that same love can’t deny her something so basic, yet I must.  A very big burden to bear.

So today I had had enough.  Aria can not suffer like this and we can not watch her suffer.   Thankfully our nurse today was understanding and listen to me as I explained where we are at.  Now Aria has a trach she is off sedation so she can be awake more.  But what is the point of her being awake if she can’t do anything but ask for water and be distressed.  So we are at the point of just wanting her sedated if they can’t solve the thirst issue.  Why can’t they solve it!?  Why can’t they just fix her?!

Honestly I just wanted to cry and cry.  Our nurse said ‘you guys are in such a hard position’  She got it.  The Intensive Care Doc came in and we spoke and while there was no solution as least I felt like he listen and understood and he was honest with me.  There is no solution right now- sedating her isn’t the best thing for Aria long term and the reason for the vomiting is a little murky.  He did talk with me and said ‘right I am not leaving the room until you are happy with the answers I have given you’  I felt really good about him saying that- giving me the freedom to be honest and totally thrash out the issues.

Honesty is such a key part of this journey.  I love it when Doc’s tell how it is.  Hard to hear- sure- but at least we know where we are.  Some more investigation is needed into her thirst, the Doc who spoke with me has some ideas.  It is likely to be two or three issues.

Please pray for Aria as she struggles, please pray for us as we advocate for her, please pray for the new team tomorrow morning, please pray for rounds tomorrow- lots to discuss.

Aria had a pretty good day today. Although the themes of the day were napping and asking for drinks of water.

The highlight of her day today was skyping with Nana and Poppa back home.

When she woke up and I showed her who was on the computer, she asked me to keep the computer where she could see it and tried her best to interact with them, giving a little wave and nodding and shaking her head. I think she liked to see some very familiar faces that she has been missing for a while.

It must be odd for Aria, she has ‘lost’ so many familiar people out of her life and had them replaced by lots of new faces, most of whom come and ‘bother’ her in her bed. She has her favourites (and not so favourites), it is cute to see her give people her trust and then start bossing them around.

It’s also hard to know how much time she remembers with the sedation she has had… maybe it doesn’t seem so long ago that she saw them last.

Anywho, it is nice to see Aria shining through in these small ways and to see how much family means to her, as we know she means so much to so many.

Will start of with the big high of the day – SMILES FROM ARIA 😀

It involved me making two of these ‘alien’ creatures run and crashing into each other, I knew that would get a laugh.

It was the first smiles since transplant so it was hugely exciting.

The lows are

Aria has cultured Staph Epid in her blood.  This is a bummer and we are pretty disappointed.  This is a bug found on skin and has either come from bugs tunnelling thru her central line site (unlikely because the skin around it is looking good) or poor line handling from the staff here.  All and all people are pretty unfazed by it around here, kinda like ‘oh that just happens when a line is handled a lot’.   But we will chase and see if we can get better answers and we have some ideas to improve things so hopefully they will listen.

The trach is taking some getting used too by Aria and myself.  I feel pretty anxious today.  She wants to drink heaps but can’t because it isn’t going in the right place.  She drank about 30 mls and it got into her airways and her O2 stats dropped.  It was a little hairy but they suctioned her.  It is hard not being able to do anything for her, I just have to buzz and hope someone comes and quickly.  I wish I could just do it myself.

Argh- around 4.30 all this blood started coming out of her wound vac and into one of her drains.  Little scary.  They took down the wound vac and the surgeon came and he doesn’t think it is anything major.  Phew, but the wound vac will stay off for awhile to give it time to heal.

Anyway focus on the positives and forget the negatives right?

Today was an interesting day.  It was the first full day with Aria’s trach and it was all about learning.

The sedation has been taken down and her personality is coming back.  Interestingly we have been able to hear her voice a little bit which we shouldn’t be.  I heard her say a few words like ‘Book please’ and of course ‘NO!’

Unfortunately it looks like the trach is in a funny place because she was spitting up a bit today.  She has been very thirsty the past couple of days and it has been pretty hard to keep her happy.  Every time she would drink something normally it would come out of her wound vac but today it would ‘sit’ somewhere (not sure where) and come up again a bit later on.  So ENT will be back tomorrow to check.

My big goal is to get her to smile.  Not sure how I will get that to happen but I imagine it will involve me pretend to fall over or hit my head- those jokes always got laughs from Aria.  It is kinda like having a newborn !!

We read an animal book together than she choose and she was making all the mouth movements the animals where to communicate how they were feeling.  She did really well.  Lots more communicating with her little voice and signs.

All and all it was a positive day I think and I enjoyed her company.

Someone asked about temps and injection I think in a comment.  Aria is still battling temps but all her cultures are clear so they think it is drug related.  Her white blood cell count is normal so that is a good sign and her heart rate and BP are good too.

Aria is doing really well.  The trach is in and looking good.  They are going to start weaning her sedation and start weaning her vent settings.  I plucked up the courage to asked the big question- When are we going up to the ward?  The answer – not while she is still on the vent.  PHEW and double Phew!

I am still not 100% clear on the details about how much she will be on vent and if and when we can put the speaking valve on her.  All I know is that she is making progress and we will take it a day at a time.  The talk is to trial 4 hours on oxygen only and see but I don’t know if that means we can allow her to do some talking.

Aria looks great without the white tape on her face- bummer I left the camera at home but will take photos soon.

Yesterday was a massively tough day.  Sometimes the reality of our situation comes crashing in and it is really hard.  Aria getting the trach was totally the right thing to do and a really positive sign long term but still tough.  My little girl has this weird hole and pipe in her neck and will have a scar there, not easy.  Actually it isn’t as bad as I thought it would be and getting the ugly tape off her face is a bonus.

Our journey is fairly lonely at times, well actually most of the time.  Not saying we don’t have great support, 98% of the people in our big world are wonderful 1% are awful and 1% are absent but it is hard for people to understand the hardship we face.  And in turn it is hard for us to communicate cause it isn’t something we want to talk about sometimes or when people ask you don’t want to ‘dump’ on them or ‘bum them out’.

Anyway Aria is doing pretty good and I have been able to hear a few words, very quietly but Aria is great at making herself understood.  Yesterday Asher came to visit after preschool and Aria and I had been talking about whether or not Ashie would like to eat ice like Aria does.  Aria asked me to go get ice and let me put Asher on her bed.  So they sat and ate ice together.  Aria seemed happy to share and activity with Asher and Asher liked helping Aria.  Asher thought eating ice with spoon was great.  Both of them are such sweet kids.  Asher is super caring with Aria.