2010 May - Aria MacDonald

Feeds are going well and having been increased from5 to 10mls per hour.  Are you thinking the same thing as me?  10mls an hour!?  That is like nothing.  The end goal is 80mls an hour 24 hours a day- so there is a long way to go but one day at a time.  Aria is getting this stuff, it goes into her NG tube which goes in her nose and down the back of her throat and stops just before her tiny stomach.

Aria’s health has regressed a bit today which is disappointing.  Her vent settings have gone back up.  Mainly because her FK/prograf/tak/anti rejection med level is too hard and her kidneys are mad.  And when they are mad they don’t process the pee very well so she retained 800 mls of fluid which makes it harder to breathe. Also her WBC bumped up again to 30, which is getting to high for my liking.  They took the staples out of the bottom of her wound and it popped open and let out some fluid which was the result they were looking for.  But cause they have ‘stirred things up’ this in the reason for the WBC to jump and it should come down tomorrow- hope they are right!

In general she is pretty sleepy and not up to much except watching DVDs if she is awake.  It is her birthday on Thursday but we are thinking about putting the celebrations on hold until she can enjoy them.  She is young enough to look forward to her birthday but not old enough to realise what day it is.  We would like to do lots of fun things for her and have her be able to enjoy them on the day.  We know her health can get to that point so we want her to be in the best spot possible.  Aria needs to have fun- she deserves the best birthday ever!!!!

Today is Memorial Day in the US, kinda like ANZAC day in NZ.  Aunty sat with Aria and Hamish Asher and I went out to play baseball and a BBQ at the pastors house of one of the churches we go to.  Actually Hamish played ball and HIT A HOME RUN!  Asher had a mad fun time playing in the padding pool and ‘watering’ their dog (who loved it)  It was lots of fun to get out although kinda hard too cause we feel different and weird.

Anyway thanks for reading and all the super comments yesterday- it was a HUGE day. There is a lot to be thankful for, but please pray Aria feels better soon!

ARIA HAS STARTED INTESTINAL FEEDS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Praise be to God!!!

Please would you take a moment to register to vote for the KIDS foundation to win a big cash donation.  This is the charity that supports our family so very well.  I feel bad because I have forgotten about it and May is nearly over SO PLEASE VOTE.  Will all the people that read Aria’s site we could totally win it for them.

Also Aria has a Facebook fan page you can join.

Please would you take a moment to register to vote for the KIDS foundation to win a big cash donation.  This is the charity that supports our family so very well.  I feel bad because I have forgotten about it and May is nearly over SO PLEASE VOTE.  Will all the people that read Aria’s site we could totally win it for them.

Also Aria has a Facebook fan page you can join.

Today we arrived and Aria was visibly much, much better.  Her swelling has gone right down and her little tongue is back in her mouth.  Poor thing was so swollen that even her tongue was so big it couldn’t stay in her mouth.  No fun at all.

She is peeing heaps which is great.  During one hour this morning she had 145mls out!

Her vent settings and gases are good.

AND they are clamping her for 2 hours and off for 2.  Then tomorrow it will be clamping for 3 hours and off for 1 and Sunday will be clamping for 24 hours.  SO on Monday, Memorial Day in the US, we should be starting feeds.  Of course that is what we said last Friday when Aria tanked rather dramatically so we are holding our breath to see.

I asked for a little lesson on the plumbing of Aria’s kidneys today.  Apparently they have tried a new procedure that they have never done on anyone else before, that made be a bit nervous and I am glad we are only finding out about now.  It involved using a portion of the donors bladder and original plumbing.  The surgeon said that God made plumbing is better than man made- who would of guessed 😉 This method is better because it avoids the dreaded kidney reflux were pee flows back up into the kidneys and causes problems.

The only bad thing at the moment is that Aria is having some temp spikes to 39.5 (103 F) which is pretty hot.  Hopefully she isn’t brewing anything new (but blood cultures are negative so far.)

They may be some setbacks but we are so thankful that Aria’s recovery from this is not going to be months like was first suggested.

Go kidneys GO!!!  Aria is peeing HEAPS,  Great news.  Her urine output in around 4 per kilo per hour.  So almost double overnight.  She has about 7 kgs of fluid to get off so there is a long way to go but thankfully it appears things are getting into gear.

The paralytic medicine is off and we are seeing a bit of movement from her which is nice.  It has been awful to see her so still and unresponsive over the past couple of days.  One of her nurses said ‘Aria always has an opinion on something’  yes she does and always expresses it so we are pleased to see her hand move when we mess with her.  She is currently telling us NO with her hands.  Thankfully she isn’t fighting the vent and her BP is stable, which was the reason it was on.  So hopefully it can stay off..

Her vent settings are still high but she is improving.  The more fluid she has in her the harder it is to breathe.

Overall the message is she is over the worst of it and on the up hill run to good health.  Although her WBC is up a bit so we hope there is nothing fresh brewing.

Please would you take a moment to register to vote for the KIDS foundation to win a big cash donation.  This is the charity that supports our family so very well.  I feel bad because I have forgotten about it and May is nearly over SO PLEASE VOTE.  Will all the people that read Aria’s site we could totally win it for them.

Also Aria has a Facebook fan page you can join.

Well today has been neutral in terms of Aria’s vent settings, in fact just now they turned one of the settings up 🙁 They did some changes this morning to bring them down but Miss Aria was not impressed.  It is a little disappointing not to have made progress today in that dept.

However her urine output has increased to 1.9 per kg per hour up from .9.  So that is really good.  There has been a steady flow all day which is great.

They turned off the paralytic medicine at 9am this morning but now at 7pm we have yet to see movement from her.  Perhaps it might take awhile.  It is only a ‘holiday’ when she moves she will be put back on it.

It is going to take a long time to recover from this.

In other news Asher had some filming of his own today.  The hospital is promoting the music therapy program to get some more funding for it.  Both Asher and Aria love music so we were more than happy for them to film us.  Asher loves to jump and jump to the songs so it is quite funny to watch.  They came and filmed with Aria too and asked me some questions.  We were hoping the music might wake her up but no joy there but we know she can hear so it was nice to do a session with her anyway.

Anyway- please would you take a moment to register to vote for the KIDS foundation to win a big cash donation.  This is the charity that supports our family so very well.  I feel bad because I have forgotten about it and May is nearly over SO PLEASE VOTE.  Will all the people that read Aria’s site we could totally win it for them.

Just a quick update to say that Aria has had slow and steady progress over the day.  Her vent settings are down and she is managing them pretty well.  They are still pretty high but better.  Her pee is still steady, maybe picking up a bit when we left.  Her stoma had a bit out of it which is good, but we don’t want to much out though.

To answer the question about her kidneys she has her two originals that she was born with and now two new ones.  The first transplanted set were removed along with her first transplanted rejected bowel (which are safety in the hands of the funeral director for cremation)

Hamish and I are off to the movies tonight!  The first time we have been on the movies in the US together!!  There is a cinema across the road from our house so we don’t have to go far.  One of the many perks of Aunty Alex being here.

At the moment Aria is in a phase of her journey where thing are being measured in small steps, a little increase here, a small decrease there. Each of these has us on the edge of our seats waiting to see if we are trending forward or trending backwards. Today we would have to conclude that we are trending forward….. ever so slowly.

A new team is on this week as the Dr’s from PICU and Transplant rotate each week and they explained to us this morning their particular approach to her situation. In essence this team’s primary objective is to reduce the potential damaging pressures her ventilator is currently set at. To do this they are willing to let some of the numbers we have been monitoring over the last few days take a bit of a hit.

So far today we have been doing ok, we have seen the percentage of oxygen she is being reduced to 40% and another couple of settings reduced by a little bit. Her blood pressure medication has been reduced to a point where it is primarily there just to help push blood through her kidneys. Speaking of kidneys, they continue to work ok, not enough to get all the fluid off but enough to keep the dreaded dialysis at bay.

We give thanks to God for these small steps and the avoidance of any major issues but hope soon we can take some big leaps forward, especially with her urine output.

This is the second post today.  In case you missed the first long rambling one click HERE.

There was an air of disappointment amongst everyone this morning.  Aria had not made the same improvements overnight and in fact she has slipped back a bit.  Worst though the sensitivities for the Pseudomonas had come back.  Thankfully we still have an ABX group to use but they are harsh on the kidneys which are already struggling.  There was also serious talk of her going on the oscillator this afternoon.  Her vent setting are very very high and actually going on the oscillator wouldn’t be a bad thing.  But it is just not nice and it a serious sign of a patients condition in my mind.

Rounds were ok.  It was hard actually because everyone was talking bad news and I just stood there and absorbed it all.  I have learnt now with certain people you just say yes yes and don’t ask questions and don’t speak unless spoken too.  Particularly when you are getting bad news cause if I speak I could cry and I am NOT crying in front on hospital staff (well only the chosen few).  You know when surgeons hold your eye contact for ages they are trying to read your face to see if you are ok but I just battled on.

ANYWAY.  This afternoon Aria’s o2 stats were dropping to 94/95.  Not good.  Her min volume on the vent was 2.8- not good.  Her gases were not good.  Oh dear- oscillator it is.  They disconnected her from the vent and bag suctioned her and got a bunch of yuck out of her lungs and she improved a bit.  But if the next gas was still bad the ICU doc was on his way in to start the oscillator.  Bummer.

So Hamish and I went outside into the hot and humidity and talked and prayed.  Serious prayer.  Please avoid the oscillator (and dialysis- that is still on the table) for Aria but YOUR WILL BE DONE.  Give us strength to cope.

What do you know- we got back to an improved gas result O2 of 99 and Min vol of 3.9!  Wow and that trend continued to when we left the min vol was 4.1!  Just rang at 8pm and they are thinking of going down on her vent settings!

You must know that prayer works- God listens.  He is still here, hearing us and loving Aria.

I need to move on and you are all my sounding board, as well as a chat with Rebecca at 5am this morning.  Yay for NZ being 7 hours behind!

This week has been TERRIBLE!!!!  Bad- epically so.

Honestly we could type all day and night and never really fill you in on everything.  This week started with the passing of our next door neighbour in PICU, Valeriana.  This little girl battled thru a great journey and went to peace on Monday.  Her parents had become our friends and Asher LOVED their older daughter, as did we.  We are sad for them but chins up and proud as they would say.  Val’s mum and dad were inmates with us, co-workers, prisoners of this war we fought together.  Same with Almariah’s mum and dad.  I learnt so much from these families on life and faith and courage.  We will totally miss them and always remember their sweet girls.

Now we still here with Aria, in a critical but stable condition.  She has never ever been this sick in her life.  Even between transplants she was ok, obviously needs new organs but she was maintaining herself.

Truthfully I just don’t know what to think.  Between transplants felt worst to me, we were not sure which way God would go.  This time it doesn’t appear to us that He is planning to take Aria, no one here is concerned she won’t recover from this.  But this is a significant setback in her recovery.  Because this has seemed to mainly effected her lungs I wonder what the last impact of this will be and how much longer she will be on the vent for.

She is stable which is good.  She didn’t make much progress overnight and one of her vent settings went up.  One of the biggest things is her fluid status.  She is 21 kgs and HUGE with fluid which inhibits breathing.  But her kidneys are grumpy so aren’t peeing much, but doing just under the minimum, about 1 per kg per hour.  Not enough to shift the litres of fluid she has to get rid of.   They don’t want to do dialysis just yet which is fine, we are totally ok with that.  But if those kidneys don’t start soon….. Also her FK/tak/someother name/anti rejection med is high which also makes the kidneys mad.

She is on dopamine which is a drug to keep her BP stable.  She isn’t maintaining it herself.  They dropped it to 18 from 20 but haven’t been able to move further from that.  But we aren’t getting the dips we used to.  Today we gave her a full bath and changed her sheets and she was all good.  Some kids you can’t even touch them because their pressures will drop.

She has tested positive for the common cold virus but surely that couldn’t of done this.  And the fluid from the belly taken in the OR has tested positive for the dreaded Pseudomonas but we will wait and see what happens with that.  We have no clear answers about what has caused her to crash like this.

The second part of her doco aired yesterday on TV in NZ.  We haven’t seen it but hear it is good!  NZers can watch it HERE if you missed it.  We had a huge response to it and we so thankful people are so kind.  It means a lot to have voices in this journey.  We know there are people that read this blog but don’t comment.  That’s fine too, we know you are there and don’t know what to say or don’t want to post in public.

Finally we have haven’t commented here on the application for the top up of funding.  We have been nervous about negative responses so wanted to give it some time and have avoided negative media who have sought to make this an issue.  I trust Attitude very much and I don’t know what aired but I will say this.  We had the firm support of the team here and at home, everyone was in agreement a 2nd transplant was the right thing to do and Aria would walk away from this with quality and quantity of life .  We could not turn our backs on a 2nd chance for Aria simply because of money.  We are truly deeply and forever thankful to the MoH for backing Aria again.   New Zealand is a truly wonderful country and it’s government is good.  I know that a 2nd chance wouldn’t of come so readily if she had been born some place else.

Anyway- there is a LOT of stuff in this post.  Stuff I have wanted to say for ages.  Thanks for listening.