2011 March - Aria MacDonald

We took Aria back to hospital today.  Her cold finally got the better of her and us and we didn’t feel comfortable having her at home.   Strangely enough they actually called us in on Monday night.  We went in for three hours, did bloods and left.  But today she has a fever, had a really bad night sleep and was very sleepy and grumpy in the morning.

Her white blood count is really really low.  Normally we have the opposite problem, it is normally high because of infection and we try to bring it down.  Her platelets and other bone marrow markers are low too.  She has a sinus infection diagnosed from xrays.  Her chest xray looks good though.  The Infectious Disease team sent off a bunch of tests and we are hoping for something positive to explain the low white count, likely a virus.  Last time this happened she just had the common cold virus but that time she tanked and was on pressors in the PICU.

Anyway, she is looking better this afternoon and was racing around the place.   She had to go down for xrays and they took lots of pictures because it was tricky to get her sinuses at the right angle.  She did awesome and at the end got 3 stickers.  She yelled ‘thanks’ to the xray staff, as we left, who thought she was pretty cute.  Aria thought 3 stickers was totally worth the hassle of all the photos.

Good news was that we were able to advance again on feeds, she is at 80mls an hour and goal is 90.  Nearly back on full feeds!!

Hamish and I are quite tired from the constant bad nights but otherwise we are doing well.  Asher has decided to become quite the people person at hospital and around the apartment.  He say ‘Hi!’ to everyone.  Today he started talking to this grandfather who had brought ballons for his granddaughter in hospital.  Asher told him that he liked balloons too.  It was pretty funny.

Anyway better sign off and get an early night.

…….normally means not much sleep happening in this house.

Aria is battling a bit of a cold right now.  She has been having low grade temps for a couple of days and has quite the cough.  We have rung the team and took her to clinic and we all agreed we could manage her at home.

The trouble with Aria is this central line.  A temp in a kid with a central line puts everyone on high alert.  An immune suppressed kid with a central line double high alert!  Thankfully though Aria has been a pretty happy chap, walking around, laughing and chatting.  Kids with central line infections don’t do that!

Our sleep on Thursday night was pretty bad, I think I got about 2 hours.  Last night was better so I think we are on the downhill side of this.   That is good, look like we have been able to avoid a hospital admission and manage her at home.  We have build up quite a collection of tools in our tool box and have been using them all but thankfully we didn’t have to bust out the O2 (which is still sitting untouched!)

More conversations at clinic on thurs about Aria’s continued dumping.  We stopped her Imodium for 48 hours while her gut recovered from the General.  Unfortunately the dumping came back but it is back under control now.  So we have it control and we are advancing her feeds- up to 70!  Goal 90!   They were saying about how fabulous Aria’s transplanted gut was ‘You could give it any formula and it would be great!’  The surgeon was convinced without doubt that it would in time return to it’s former glory, we just have to wait it out.  So it we just have to wait and trust- it is hard though, three months on, I just want it to be over!

Psalm 27:14 (New International Version, ©2011)

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

Please keep Emerson in your prayers.

Aria got a new wiggle this morning.  Everything went smoothly and it is back on her left side.  Quite pleased about that.  All of Aria’s lines have been on her left side until recently.  We were thinking that perhaps access had gone but they said they got it in pretty easily after the 2nd go.  Once you place a line and then remove it it often forms scar tissue over the vein and therefore you can’t place another in the same spot.  Eventually kids like Aria lose places for surgeons to put lines.  Thankfully Aria still has plenty of access despite having a central line since she was 2 weeks old and having two transplants!!   Of course we hope to remove this current line very soon and never require a central line again so hopefully access is either here nor there.

Aria did pretty well came home and slept for a couple of hours given the fact she was woken at 5.30 to go in.  She got a bit emotional when we took her and Asher out for a walk.  Once we got home she asked for some ouchie medicine and that she perked her up a bit.  Oddly enough she vomited a couple of times when she got home.  Likely the General slowed down her gut and she is also on Imodium, so I think we slowed it down a bit too much after it’s frantic dumping of the past months.

Anyway thanks for your prayers.  Please keep them up for Emerson as she recovers.

Yesterday Aria had her first proper bath since transplant.  Actually it was her first proper bath since being the US!  How strange.  For those of you who saw the last TV show from Attitude you would  see that we sat Aria on a plastic seat in the bath and kinda washed her down.

Bathtime for Aria had turned into yelling and crying stressful events.  Not sure why, she just hated then.  So we decided to try something different so we cleaned the bath and cleaned it again and filled it up and popped in her (after much convincing and bath toy gathering).  She had a great time!!  No tears or drama!  What a relief!!  Of course it would of be much nicer if she didn’t have a central line, we made do and protected it as best we could.

Speaking of lines, Aria is going to the OR at 6am for a new central line tomorrow.  Yikes!  So early!  Please pray this goes smoothly

In other amazing news, for the first in months we have been able to advance her feeds past 30mls.  WOW.  Her outputs are finally finally trending down.  Tonight we will go up to 60 mls an hour, goal being 80.  So close to being on full feeds.  The relief is massive I tell you.  These past months have been really trying and a HUGE test of faith and trust in God.

Aria’s night are still pretty hit and miss.  We had a bad couple of nights, hence why this blog has been a bit quiet.  Last night was better though.

Bathtime & feeds & a new central line & sleeping.  Interesting topics.  So much different to the topics we were thinking of last year.  Ventilators & transplant viability & superbugs & life & death top of the list.

Our friend Emerson is struggling right now.  She will overcome, of course.  Those who know Emerson know that this always happens someway somehow.  But this little lady is having a very hard time right now.  Her mum has big topics on her mind too and that, in my experience, is a super hard place to be in.  Please lift them up high in your prayers.

Psalm 106:1-2

¹ Praise the LORD.

Give thanks to the LORD, for he is good;
his love endures forever.

² Who can proclaim the mighty acts of the LORD
or fully declare his praise?

March 2010

March 2011

So Aria is home again.  A week long admission.  Feels good to be home.

She is on quite the regiment of medications!  Of various methods.  As I write this she is having her ‘eating medicine’  Her enzymes.  We mix them with applesauce and spoon feed them to her.  She has to eat them because they are to big to go down her NG tube.   She doesn’t how to eat and we are really hoping this will teach her.  Currently she pushes food out of her mouth, kinda like when you have a hair in your mouth and you are trying to get it out.  This morning she has done better, so that is encouraging.  But it takes a lot of coaching and encouragement to eat a teaspoon of mush.  And we have to do it twice a day.

Frustratingly we had to order back all Aria’s o2 supplies!  Argh!  She has been needing a little bit at night this week but was getting better but we had to be safe and make her we had o2 at home if we needed it.  When I was returning the supplies last week I wanted to return the big compressor and keep the little o2 tanks, just in case for a septic episode.  But insurance companies rules are that once you are off O2 you have to return ALL your supplies.  Try explaining that we don’t have insurance and our govt is paying and we don’t have to abide by these silly rules!  So against my better judgement and gut feeling all the O2 supplies marched out the door.  Aria has gotten better over the week and last night didn’t destat at all. So there is a pile of O2 consumables and a compressor and tank sitting untouched and probably/hopefully will remain that way.

As for the dumping, it is still the same 🙁

Anyway thanks for the prayers, please keep praying for this bowel to hurry up and start working again.

Aria woke up pretty grumpy this morning.  She said ‘nurses wake me up too much’  Actually she slept pretty well and I think that the nurse did a good job of stay out of the room but I guess Aria didn’t think so!  Still just before Asher and Daddy got in at 10 she started to perk up and smile again and next thing you know she is standing painting at the easel Child Life brought in.

Aria went down for a temporary line today.  Not a permanent line.  They want to wait for 48 hours of clear cultures before risking the yeast sticking to a new line.  Thankfully the peripheral in her hand lasted almost three days!  Wow!  They cultured the tip of her old line and it was a petri dish of bacteria 🙁 so glad it is gone.

Rounds this morning confirmed that all the biopsies were negative for everything, not even inconclusive.  That’s good.  I guess tonight I don’t feel as elated as I did yesterday.  The reality is Aria is still dumping and while she doesn’t have anything serious we didn’t feeling that the team are 100% sure this is still Norwalk.  To be fair rounds have be rushed and patchy this week and we have only seen the surgeon for the first time today.

Still my gut told me yesterday Aria wasn’t suffering from rejection and GVH.  And my gut tells me this intestine is completely fine!   Why?  Here is my thought process:

God rescued Aria from liver disease not once but twice!

He provided funding and a gift of organs not once but twice!

Between transplant her little body was gripped with a multi drug resistant super bug which made a come back at the end of last year.  Despite many bacteria growing this admission all of them were sensitive to lots of drugs and the super bug  hasn’t been seen since we started her inhaled antibiotic treatment.

Aria spent months on a ventilator unable to breath by herself, months at home on oxygen and diagnosed with chronic lung disease.  Despite a setback end of last year, she now breathes room air day and night!  We even sent back all her oxygen stuff last week!

So you see there seems to be a clear pattern of huge mountains for Aria and God overcoming them, so it gives me faith that He plans to continue to be gracious to her and us.  Could I be wrong?  Maybe.  Maybe one day there might be a mountain that God chooses for Aria not to climb.   Would he still be completely Good and worthy of our praise?  Yes!

Aria is doing much better today.  She is smiling and laughing and talking again, all good signs she is better!  Medically speaking her white count (infection marker) is down from 20 to 13 overnight so it appears she is on the right antibiotics/anti-fungals to manage this infection.

We feel really grateful that she did so well with this infection.  Having yeast (fungus) in your blood is very serious, even more so than bacteria.  Besides her heart rate getting high, low grade temps and having to need a bit of oxygen her little body coped very well.  It could of be so so much worse.  Thankfully the team and us got her to hospital within an hour of her first temp spike and we able to catch these bugs and treat them.

Aria is going to the OR tomorrow for another line.  Really hoping that her peripheral in her hand lasts overnight!

Also the big relief of the day was that her biopsy results are all negative for rejection and graft V host.  Also negative for Norwalk but it is still positive in her output.  So we box on and hope to clear this virus from her gut.  They are going to try a new medicine thru her intestine tonight to clear the Norwalk.  The staff refer to it as witchcraft and voodoo, jokingly, as they don’t have a lot of faith in it’s effectiveness.  BUT is has worked in some people and God will either bless it or He won’t.

So we are quite relieved and keep looking forward to a time when this nasty virus will clear and her intestine will work again.

Thanks for your prayers!

“I am not skilled to understand what God has willed, what God has planned

I only know that at His right hand stands One who is my Saviour”

Aaron Shust My Saviour My God

Some days this can only be your only comfort.  Yesterday was one of those days.  I witnessed what I think was Aria’s most traumatic and difficult procedure ever, which was ultimately unsuccessful.    To painful to go into details and I don’t wish to speak negatively of the hospital that saved her life.  Needless to say there has been a steady stream of listening ears and apologies this morning thru Aria’s room and the matter will be taken further.

My daughter is amazing and brave and to watch her suffer is horrible.  I just want to pay tribute today to how amazing she is and how amazing it is to be her parents!

She is doing pretty well for someone who has yeast in their blood and an infected line!  No temps overnight and her blood pressure was good and she was stable.  We did have to pop the oxygen on her at one point though.

Aria went down to have an extensive scope and to finally have that nasty line removed.  She was put to sleep for this.  They are checking her stomach and intestines top and bottom for Graft V Host, rejection, inflammation and the presence of a virus.  Which one do we want?  We will don’t want rejection that is for sure or G V H.  We would still like to blame her high outputs on this Norwalk.

So we wait until tomorrow to get results and pray pray pray that this precious bowel is ok and will make a full recovery.

Thank you friends for praying!  At times I felt to weak to cry out to God, thanks for doing it for me!

Aria is back in hospital and this time is actually pretty unwell.  She was a bit off yesterday and at 5pm she had a low grade fever and was asleep on the couch.  And her outputs had been really high.  So we called the team and they didn’t hesitate to bring her in.  And of course we are glad she is here because that night her heart rate got up to 205 and her temp spiked higher.

Turns out she has yeast and gram positive bacteria in her blood and line.  Pretty bad.  BUT we are kinda relieved it isn’t her Puesdomonas back, that would be bad.  At least this is treatable and doesn’t signal future problems.  To be honest we are not surprised.  It has been impossible to keep her central line dressing on with her skin being so peely and gross.  It just won’t stick so the bugs could easily had tunneled thru the skin and into the line.

And they are planning an extensive scope tomorrow under a GA.  Looking top and bottom at her intestine just to make sure that her high outputs can still be blamed on the Norwalk virus.  We are really happy they are wanting to do this, it is the right thing but it has brought up some super tough emotions.  It feels like a massive test of faith and in fully trusting this transplanted bowel to God and giving it over to Him.  It was a gift from Him (and our donor family) and HE will do a work in it.  He gave it and He can take it and He would still be Good.  BUT in our heart of hearts we really don’t believe that His plan is to take this bowel.  God has done such an amazing work in Aria’s life we can only conclude He will continue as that has been His leading.

Finally got a peripheral line in Aria’s hand.  It took 6 stabs and she was amazing.  Her skin is still tough and hard so it was tricky.  Aria was so amazing, partly because she isn’t really well so didn’t put up much fight.  At the end she said ‘thank you everybody’.  Next they will remove her central line which here involves yanking it out with a hard pull.  Kinda scared about that, seems pretty rough, don’t remember them doing it like that at Starship.  But better than a GA I guess….

Anyway Asher is also sick.  Got a vomiting bug which maybe Aria has picked up too which might explain the increased output.  Or the yeast could too…..

Tough day for sure.